Persistent vegetative state and minimally conscious state

In this post I thought I would talk a little about persistent vegetative state (PVS) and minimally conscious state (MCS). Though this topic may not concern many of you, I feel it should be discussed as the question of PVS is raised frequently by family members of patients who are in coma.

Doctor is he brain dead? Would he wake up? If yes when? Is he going to be a “vegetable” for the rest of his life?

So what is PVS and how does it differ from brain death. I shall try to make this simple and explain with the aid of a crude example. Let us assume a person suffers major head trauma in a motor vehicle accident. He is brought to the hospital and CT scan shows extensive bleeding in the brain. He is in the intensive care unit on a mechanical ventilator while his blood pressure is been supported with the help of medications (we call such medications vasopressors). Now a neurologist is called to see him regarding prognosis. On examining him the neurologist notices that his pupils are dilated and fixed (do not react to light) and the rest of his brain stem reflexes are also not elicitable (please see my previous post on brain death). An EEG is ordered to confirm the diagnosis of brain death. The EEG shows no cortical (brain) activity above 2 microvolts (meaning it is essentially a flat line) and is thus consistent with electrocerebral inactivity (ECI). SUCH A PERSON IS BRAIN DEAD AND CAN THUS BE REMOVED FROM THE VENTILATOR (OF COURSE WE TAKE THE FAMILY’S WISHES INTO CONSIDERATION). BUT FOR TECHNICAL PURPOSES HE IS DEAD. Remember what I said earlier one cannot die twice, once when the brain stops and once when the heart stops.

Now lets take the second scenario. The neurologist examines the patient and notices that he does not respond to verbal commands, does not respond to a painful stimuli such as a pinch but the brain stem reflexes are intact. His pupils react to light, he gags when the back of his throat is touched, he takes a gasp on his own when he is temporarily disconnected from the ventilator. THE NEUROLOGIST RIGHLY SAYS” PATIENT IS NOT BRAIN DEAD BUT HIS PROGNOSIS FOR RECOVERY IS GUARDED“. Time goes by say about a week. The patient is now still in the intensive care unit but at times responds when he is stimulated, does not open his eyes or talk but moves his arm if he is pinched. More time goes by say about 2 weeks. The patient is now opening his eyes. He now has a tracheostomy and slowly is been weaned off the ventilator. He is still not able to talk and does not interact with any of his nursing staff or his family. More time goes by, the patient has been weaned off the ventilator. He is now out of the intensive care unit and is transferred to the hospital floor. A neurologist’s opinion is asked for as “the patient does not respond”. The neurologist examines the same patient whom he had seen in the aftermath of the trauma. 10 weeks have gone by since the injury. The neurologist finds that the patient open his eyes spontaneously, at times even yawns, he is told by the family at bedside that the patient has sleep wake cycles (meaning he sleeps at night and then wakes up after some time just like any other “normal” person).  As the patient’s mother walks into the patient’s room, the neurologist notices that the patient tracks her with his eyes for a short time when she enters. But there is no meaningful interaction of the patient with his environment. It is as if the patient is there but not there. He does not make purposeful eye-contact with anyone. There is nothing in his actions to suggest that he is truly responding to those around him or interacting with them. The tracking movements of the eyes are semipurposeful and so is the yawning behavior–more like a reflex if not anything else.

A person like the one above may be labelled as one who is heading into the persistent vegetative state (PVS) category. You can imagine the delimma for the family members if you tell them that though the patient may remain “alive” for years, he shall never have any meaningful neurological interaction and hence it is better to let him go. “BUT DOCTOR HE IS ALIVE, HE YAWNED TODAY, HE LOOKED AT ME WHEN I WALKED INTO HIS ROOM”: they will say.

Patients who are truly in the PVS shall never recover any meaningful neurological interaction with the environment–this is by defination. But as is true in medicine, everything is not black and white. there are shades of grey. Patients who meet the criteria for PVS but then who later on start showing “some” recovery. Some purposeful goal directed behavior starts emerging. So a new category of minimally conscious state has not come into the literature. There have been some studies done to show that the brains of these patients do actually respond and they are far from a PVS. A lot of research is now been carried out to determine how we can benefit these patients.

If the right procedure is followed and the neurological examination and relevant investigations are carried out and repeated if required after an interval of time, most of these patients can be rightly categorised into the brain dead, PVS or MCS category thus avoiding confusion and anguish to the family members.

Nitin Sethi, MD

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133 thoughts on “Persistent vegetative state and minimally conscious state

  1. Thank you for writing in Anna. I apologize for the spelling errors. Most of the posts are written on the run inbetween patients or after a day’s work. At times I do not pay close attention to the spellings or the grammer. I plan to be more careful in the future.
    Personal Regards,
    Nitin Sethi, MD

  2. Thank you for the post. It describes my Dad’s situation since his MVA almost exactly. That is, up until about 4 weeks ago. It was then that he started to change. With inconsistency, he began to repeat words; write letters and words when asked to; comb his hair, brush his teeth; hold up the same number of fingers as I was, and follow all basic commands given to him without delay. The doctors at the hospital haven’t changed their diagnosis from MCS and have written him off to a certain extent, but I feel like he is emerging beyond MCS. Any information would be much appreciated. Thank you.

  3. Dear KJ,
    thank you for writing in. From what you have said, it indeed seems that your father is moving beyond a MCS and it making progress. I am especially encouraged by the fact that he is able to follow all basic commands without delay. As you can understand, terms like PVS and MCS (especially MCS) are subjective to an extent and a patient may progress or change as time goes on. Doctors may give a guarded prognosis and not change their assessment till they are certain that the patient is indeed showing improvement.
    I wish your father the very best. Please do keep me posted about his condition.
    Personal Regards,
    Nitin Sethi, MD

  4. my dad was involved 4 months ago in a motorcycle accident. Your second scenario describes exactly the process dad went through at the trauma unit, then at the hospital, now at a longterm care facility and where he continues to be diagnosed as persistent vegitative state. This is agonizing to the family and devastating to me. You mentioned at the end of that paragraph to let him go. These words are like a cutting knife thru my heart, and unberable to comprehend. How am i able to let him go, if he is not dead, he is breathing on his own, and all his organs are functioning perfect. Its crazy… its so hard.. i pray for strength.. please help. thanks for reading these crying words. Take care God bless

    1. Dear Loren,
      thank you for writing in to me. I am sorry that you pass through such difficult times. I send you and your father my best wishes. Stay strong.

      Personal Regards,

      Nitin K Sethi, MD

  5. Dear Janneth,
    I thank you for sharing what you have being going through with me. I can only imagine the pain and suffering you and your family are passing through.
    I pray to God to give you strength and peace. We may be strangers to each other but I stand beside you in these difficult times.
    Yours Sincerely,
    Nitin Sethi, MD

  6. Does the amount of time that it takes to move from coma to PVS to MCS make a difference in prognosis? A good family friend was given a poor prognosis based on an EEG done in the first 24 hours (after CPR), but after 60 hours he is opening his eyes, trying to sit up and pull out tubes, and (twice) smiling or crying in response to comments. Does that put him in the MCS state now, or not necessarily yet? And does it matter that he has progressed so quickly after the event, or does that really not help predict whether he’ll return to normal consciousness? Thank you.

  7. Dear Hannah,
    thank you for writing in. It is always difficult to prognosticate about the neurological outcome of a patient immediately or soon after the acute insult.The reason for this is that neurological signs frequently fluctuate early in the disease course. Studies like EEG may also change depending upon when in the disease course the test was carried out.
    The fact that your friend has made much recovery and is now opening his eyes and trying to sit up surely is a good sign.
    Unfortunately it is extremely tough for me to say what state (MCS or something better) he is in.
    That has to be determined by a doctor at the bedside after a good neurological examination and taking studies like EEG and MRI into consideration.
    Personal Regards,
    Nitin Sethi, MD

  8. Dear Gina,
    thank you for writing in. I did not quite understand your question. There are many resources on the internet where you can get good information about persistent vegetative state. If you need any specific information, I shall be more than happy to provide it.
    Personal Regards,
    Nitin Sethi, MD

  9. I am father of a patient Jawad Pasha who is 26 years old now.He was injured in 2004 in perhaps a road accident with a very severe brain injury.He was declared a PVS but now he has improved,slowly but visible.We understand that he is in Fully Conscious State now but still no motor fuction. Smiles ,laughs ,and responds by blinking eyes.Now started to make voices and some time try to move his fingers, hands,arms and a leg.Still feeded by tube but this year his recovery is little better than before,What we can do now ? Very little rehab facilities are available here at Pakistan but I think metter of improvement after brain injury is actually is peraps not a medical issue.It is a metter of rehab and depends on family ,friends and care givers.

  10. Dear Mr. Pasha,
    thank you for writing in. You are right when you say rehab does play a big role in recovery after traumatic brain injury. The love and support of family, friends and care-givers is essential as patients sometimes make a frustatingly slow recovery.
    I wish your son my very best. May God be with you and your family in these difficult times.
    Personal Regards,
    Nitin Sethi, MD

  11. i’m a father of patient 8 years old , he had closed TBI from acar accedent since 45 days ,there are no Fractures in his body , he started opening his eyes after 16 dayes from the injury ..Chewing always.. he is tracking objects sometimes , watch a tv (when we move the tv he track it by his eyes) he is very sensitive to any sounds and beeing freak (he is like afraid by moving his body rapidly when somebody touching him suddenly) ,showing some facial muscles movement, arm movement as reflix always , feeling pain and moving his nick strongly when nurses inserting the tube in his nose … not obey to commands .. no talking … his general health is good ..
    what can i expect ?
    thanks for your opinion and your help (and i’m very sorry about my weak language)

    1. Thank you for writing in. I am sorry to hear about your son. It is indeed difficult to prognosticate about a patient’s recovery after closed traumatic brain injury. This is even more true in the case of children as a child’s brain does have a remarkable capacity to heal.
      We usually do not prognosticate or make a diagnosis of persistent vegetative state till about 4 weeks have passed since the index event. This time interval at times varies depending upon the type of head injury–traumatic brain injury versus anoxic (lack of oxygen to the brain) brain injury. It seems your son is having somato-sensory myoclonus (patients have sudden shock like movements such as body and arm jerks if they are stimulated, as by a sudden touch or a loud sound).
      Somato-sensory myoclonus is a non-specific sign of diffuse brain injury/ irritability. At times the myoclonus responds to sedative drugs/ anti-seizure medications. As for your question about what can you expect. That is indeed hard for me to answer since I have not examined your son. As doctors we usually are able to prognosticate the family after taking into account various test results such as MRI brain and EEG study (to look at the brain waves).
      I wish your son my very best. Please feel free to contact me again if you have any further questions.

      Personal Regards,
      Nitin Sethi, MD

  12. Thank you Nitin Sethi, MD
    I need to ask a Question.We are looking many changes time to time and all the time these are resulted to a seizure.Can Seizure/Fits be helpful for a PVS ? My son is recovering slowly but visible.Please search about Jawad Pasha.

  13. Dear Jawad Pasha,
    I am happy to learn that your son continues to make a slow recovery. Seizures may be a common occurence in a patient in persistent vegetative state depending upon the etiology of the persistent vegetative state. Patients who are in PVS due to trauma or anoxic (lack of oxygen) injury to the brain frequently have seizures.
    Seizures should be aggressively treated and controlled and thankfully we now have many medications that can achieve this goal.

    Personal Regards,
    Nitin Sethi, MD

  14. Thanx again Sir,
    Actually i do not agree to the idea of any medication for a PVS by nrurologests how ever other health requirments may be treated.Simply when no result there should be no medication.If it is for study purposes,patients or their caregivers must be informed.Same about their seziures/Fits.There are two types perhaps which we are looking in case of Jawad Pasha,One perhaps due to brain changes and seconds oerhaps due to his physical and pscycological problems and we are successfully experiencing to avoid secod type of fits by diverting his attention.I just want to share you an other wonderfull experience.Tonight and last time I braught him to barber shop for haircut and he sat just like normal at his chair during whole hair cut.I am now in 5th year of this grace of god and have to tell much more but I am not good in English. (Do you understand Hindi/Urdu?)

    1. Dear Mr. Pasha,
      God is indeed kind and I am happy that you experienced this personal joyful moment when your son had his haircut. I understand Urdu and speak Hindi fluently. Please feel free to write in again, it is always good to hear from you and your wife.

      Personal Regards,
      Nitin Sethi, MD

  15. I am really thankfull to you on behalf of all brain injured people for your support to them.It is a great work and although a great spending by western governments actually nothing could be done for these helpless people.I have to ask you that are there possibillity of regaining motor function. Is there any medical history of this?

  16. Dear Mr. Pasha,
    thank you for your kind words of encouragement. There is trememdous research going on in the field of disorders of decreased consciousness such as persistent vegetative state (PVS) and minimally conscious state (MCS). Neurostimulation devices such as deep brain stimulation (DBS) are being used to see if we can help these patients regain motor and cognitive function back.

    I only have hope to offer you and others in similar situation. As our understanding of the brain increases further, we may be able to help these patients regain useful function.

    Personal Regards,
    Nitin Sethi, MD

  17. Dear sir,Please give some time to read about us at http://www.paklinks.com about “Pakistan a brain injury Persistent vegetative state patients Jawad Pasha” I also want to discuss two ideas. Can we try some sort of electric shocks instead of DBS. I am sure that if with the help rehab specialist help and guide us and if we get some machines like a walker, arm mover and a sit-stand machine , we can easily go to get motor function by making movement a habbit and easy with very low signals which are always present there.

    1. Thank you. I shall look at the site you mention. I would not advise electric shocks. They can have serious complications and may provoke a seizure. Neurostimulation with DBS is at this moment in the research stage here in the United States with some studies hinting at benefits in patients in minimally conscious states (MCS). Intensive rehab is always helpful if done under supervision and assistive devices like walkers and mechanical wheelchairs can aid mobility.
      Again my very best to you and your son.

      Personal Regards,
      Nitin Sethi, MD

  18. I am sorry.I don’t want to be take your time to,much but now I understand that you know about very little facilities available here in subcontinent about brain injury.I am writing to many during last one year but could not get any support or gauidance.Can you tell me that are there some PVS improving like Jawad Pasha and if there are some . How much they improved/recovered ? I have read about some cases but no one of them was gradually improved.

    1. Dear Mr. Pasha,
      I do know there are some very good facilities (hospitals and rehab centers) which specialize in the care of patients like your son in India (especially in New Delhi). The answer to your second question is difficult for me to answer. The prognosis of patients who are in persistent vegetative states and/or minimal conscious states is guarded and can only be made by a doctor with some degree of certainty after a thorough neurological examination and after reviewing the results of various tests such as brain imaging (MRI brain), EEG and evoked potentials.

      Personal Regards,
      Nitin Sethi, MD

  19. Thank you very much. I shall like to go to New Delhi,That is very easy and cheap for me.Perhaps you did not seen the site yet.I shall love to get a refference/advise from you to a hopital there.Please must see Jawad Pasha on face book.

  20. Dear Mr. Pasha,
    sure there are many good centers in New Delhi and I shall be happy to give you some references. The All India Institute of Medical Sciences is a big state run hospital. Busy yet offers all the necessary facilities. It is hard to get in there as the outpatient clinics are always busy. My advise to you would be to have some relative or friend visit the center first with the medical records of your son. There depending upon what the doctors feel, you should proceed further. That way your trip there can be well coordinated.
    First have someone visit the hospital or look around in the region for a facility/ hospital specializing in neurology care. You can then communicate with them via email or telephone. That shall help determine if they can indeed help your son and only them would I take him there.
    I shall look up Jawad on face book. I personally never opened a face book account so I am not certain if I shall be able to see his profile. I hope all is good with your family.

    Personal Regards,
    Nitin Sethi, MD

  21. Thank You Very much. I feel very comfortable with you, I repeat request to you to must read about us at http://www.paklinks.com about “Pakistan a brain injury Persistent vegetative state patients Jawad Pasha” and more that Jawad is really improving and study about him could help others.

  22. Now I want to say more about his recovery.This winter no cough and no fever (First winter).A little cough some time due to water in mouth ( Balgham) but that is not a problem.We have perhaps seen 2 type of Seizures/Fits .One is perhaps due to electric changes in brain. We are seeing it after every 6 to 8 months, Its syptem starts 2,3 days before attavk. He feels perhaps some pain and starts water from mouth (Jhag). Its timing was 30 to 40 minutes but last year January this was more than 2 hours rill he became senceless in result of medication at hospital.(Changes in right and left side of body was noted). Other type of seizure we were facing was perhaps called sudo. We was facing it often but now we control that by diverting his attention to some other side as when we feel it is starting. There may be reasons pain,tention,feelings or complaints. He is quite healthy but now we are in need of exercise machines for him.
    Will you like to know more. Please ask specific questions.It will help us.

    1. Thank you for keeping me informed about his progress. Good pulmonary toilet is very important as usually it is infections like pneumonia, urinary tract infections (due to an indwelling catheter) and pressure sores that take patients like Jawad down. Hence make sure he continues to get good respiratory therapy along with ongoing physical therapy. Does he follow commands consistently? Does he make eye-contact? Does he have bladder and bowel control?
      Personal Regards,
      Nitin Sethi, MD

  23. Thank you. Answer is no for all. Urine and bowl are normal but we can not say about control as he says nothing but we feel he tries to tell when he passes urine.We normally use bottle for urine exept going out or exercise.Eye contact is there but not when asked but moves thumbs of both hands and a foot when asked,this is also this year devlopement.He does not blink eyes when an artical is braught near to his eyes,abnormal attitude, but otherwise he treats with everyone according to his status, HAPPY TO HEAR JOKES, happy to see dancing,Happy to go out and meet people.”He is a perfect man” Hope you understand.
    Personal Regards, Best wishes

  24. the father of my children got something caught round his neck 5 months ago , he was fit and healthy 39 year old . Is is currently at Putney rehibilitation unit in England for a 3 month assessment , we were told that he was first in VS but have recently been told hes in MCS , he yawns coughs and just recently he seems to actually look into my eyes , his eyes have imerged from a hazy stare to sparkling eyes that look as tho he is seeing , he seems to jerk alot when he hears familiar voices and he blinks hard as if he is trying to communicate , he has a very bad sacrum pressure sore which has limited his assesment as he cant sit in a wheelchair . Will he ever be able to communicate with his boys aged 7 and 9 ? we are having a meeting with the doctors next week to discuss what they have found during the assessment , what things should i be asking the doctors ? thanks

    1. Dear Sarah,
      thank you for writing in. I am sorry to hear about your husband. It can at times be tough to distinguish whether someone is in a persistent vegetative state versus minimally conscious state. Thus it is very hard for doctors to prognosticate about the long term neurological outcome. I think the meeting with his doctors shall prove to be very informative. You should enquire whether they feel he has any meaningful interaction with his environment. Does he really interact or what you see are just reflex movements (example does he just reflexely blink or do they feel he actually tries to communicate). How much is the structural damage to the brain itself? What does a recent EEG show?
      Nowdays we do have some additional tests (special scans) which can aid in this differentiation. Mostly though they have been used in the research setting. There have been recent reports of some patients who were in a MCS “improving” after undergoing neurostimulation (deep brain stimulation).
      Feel free to write in again. I wish you my very best.

      Personal Regards,
      Nitin Sethi, MD

      1. Thanks for your reply , it has been sometime since i wrote to you last . Simon is still at Putney , he is now in a chair for a few hours a day , they do think that he is minimally conscious as he tracks pictures etc . He has recently started opening his mouth really wide as if he is in distress , he was spinning his head around aswell , the doctors have given him medication which has helped with the head spinning but he still opens his mouth really wide , what could that be ???
        thank you

      2. Dear Sarah,
        thank you for writing in and updating me about Simon’s progress. I am not sure what the mouth opening signifies. It may just be a conditioned reflex (yawning and so forth). What do his doctors think?
        Personal Regards,
        Nitin Sethi, MD

  25. Hi Sarah,

    My brother was attacked just over 4 weeks ago and sustained severe head injuries. He seems to be fairly similar to your husband at the moment. He is trying to sit up, actually seems to focus on us and is trying to make some noises. He is also yawning and looked as though he was crying last night. He is in hospital but has been referred to Putney too, so we are hoping he will be transferred there soon. How have you found Putney? I have heard its a great place for rehabilitation.
    I really hope your husband and my brother recover well.

    1. Thank you for writing in. I wish your brother a speedy recovery. Hopefully Sarah shall get back to you soon.

      Personal Regards,
      Nitin Sethi, MD

  26. Sir, Hope you have read about Jawad Pasha,What term can be used for him now ? As he is not a PVS or MCS now. I have come to know about another Persistent Vegetative State in Pakistan. His name is Muhammad Hussain. He is just 16 years old. He is located at somewhere in Pasheen near Quetta Pakistan. PVS is the greatest health problem. If someone can do something for him,

    1. Dear Mr. Pasha,
      I did read about your son. Not certain what label I would attach to his neurological condition as I have not examined him. I wish him continued and speedy recovery.

      Personal Regards,
      Nitin Sethi, MD

  27. Dear Dr Sethi,

    Please can you offer some advice on what we are experiencing with my brother. Its now been 7 weeks and he has had some good days, where he seemed to focus on us and move more purposefully.Still there is no speech, but some groans. However, he is being sedated at times, which we were not happy about (lorazepam) and so my father sat with him last night. He keeps rubbing his head and pulling his hair out, by doing the same robotic movemement with his right arm. When we try to stop him from doing this, or put pillows in his way he gets more agitated and stressed. My dad said that he was doing this for 10 hours and got no sleep. We feel that he seemed to be much better when he was having no sedatives (over a 4 day period). Could this be some sort of withdrawal symptom from not having the drug, or is this just a response to his head injury? The nurses seem to think that sedating him is the best thing.

  28. Dear Hayley,
    good to hear from you again. I am not sure how to advise you since I have not seen your brother. Patients who have suffered traumatic brain injury can at times have paradoxical reaction to CNS sedatives (meaning that usually sedatives calm someone down, in these patients they may cause paradoxical excitability and agitation).
    My personal experience with these patients has been that if one makes a diligent search for causes of agitation, one can zone in to the offending agent (rule out the usual stuff–is he is in pain? does he have fever or signs of infection and so forth).
    Fell free to write in again.

    Personal Regards,
    Nitin Sethi, MD

  29. Thank you Dr Sethi,
    he seems to have calmed down a little now and is not rubbing his head as much. The Doctors have told us he is not in pain, he has had a UTI which is obviously painful as he grimaces when he passes urine into the catheter.
    His eyes were open most of the day yesterday although not always focussing. He has so much movement in his legs and is always lifting them up and moving them around. Its just going to be a long journey, but we have been told that once he gets into the Neuro-Rehab centre, he will come on a lot.
    He has a good swallowing action and I think the dietician was pleased with this and mentioned about food( he is being fed by his peg a the moment)
    I like to think he listens to me, when I talk to him, even though he is not really responding to commands yet. We are just all praying for a miracle and keeping positive.

    1. Dear Hayley,
      good to hear from you again and glad they figured that out. It has been my experience that when patients like these are restless one must make a diligent search for infection. I wish him my very best.

      Personal Regards,
      Nitin Sethi, MD

  30. Dear Dr Sethi, Is there any possibility of any on line examinarion of a patient. I am not asking for Jawad Pasha. I am intrested for said Muhammad Hussain of Pasheen , Quetta ( Pakistan). I can arrange video conferrence with some doctor there.He is a cery deserving case of an area where no facility is available. I am trying my best and a very hopeful results are expected, I have sent there one paramedical who has worked with my son for years and he told that he seems to be responding.I talked with the patient many times and his family is little happy that they feel that he is responding.

    1. Dear Mr. Pasha,
      it is always good to hear from you. I shall be happy to help in any way if an online examination is made feasible. I trust that your son is continuing to make a steady progress.

      Personal Regards,
      Nitin Sethi, MD

  31. Dear Dr Sethi, Is there any possibility of any on line examinarion of a patient. I am not asking for Jawad Pasha. I am intrested for said Muhammad Hussain of Pasheen , Quetta ( Pakistan). I can arrange video conferrence with some doctor there.He is a very deserving case of an area where no facility is available. I am trying my best and a very hopeful results are expected, I have sent there one paramedical who has worked with my son for years and he told that he seems to be responding.I talked with the patient many times and his family is little happy that they feel that he is responding.

  32. My mom is currently in a MCS after suffering from hypoxia. The hospital can’t tell us how long she was without oxygen. She was in a coma for 9days. She moves her left arm on command, tracks people with her eyes, and even tries to sit up. She lifts her head and turns it from side to side and she’s even cried. She yawns but still seems to have difficulty swallowing. They’ve recently started her on an Ambien treatment. Is she really making progress or is this just wishful thinking on our part?

    1. Dear Chanetia,
      I am sorry to hear about your mother. It is difficult for me to prognosticate about her condition since I have not examined her. There were a couple of case reports where in Ambien helped patients in various altered states of consciousness. My personal experience with this drug has been disappointing though.
      I wish your mother my very best. Please feel free to write in again.

      Personal Regards,
      Nitin Sethi, MD

  33. Dear Dr Sethi.
    Thank you very much . You are a real nice person spending your time for humanity.God bless you. Jawad Pasha is going wonderful. The other PVS Muhammad Hussin is real deserving case.He is feeded by a nosal tube from last nine months.The family is not illitrate but they came to know the word of physiotherapy first time by me after eight miths of the accident.The boy is responding.They have an adge that he belongs to a tradional Pathan family with 54 persons living in one house in a village near Pasheen away from Quetta,Pakistan.His bed sore is now curing. I dont know about his injury but now I believe that the God makes the ways. Please advise me about Muhammad Hussain.

    1. Dear Mr. Pasha,
      my advise is limited since I have not seen him but simple things go a long way. Make sure his bed sores are treated. He should be turned frequently to avoid further bed sores and the skin should be kept clean and dry to avoid breakdown. Care of the bladder and bowel is alo very important. This prevents urinary tract infection and regular bowel movement prevents constipation.

      Personal Regards,
      Nitin Sethi, MD

  34. Dear Dr Sethi ;
    Thanks for your time and advise.
    Jawad is going wonderful.He is with a very good health and that is a very special blessing of God. Yong man Muhammad Hussain Khan Kakar is now sure responding. Today one of his family told me that he moved his one finger many times when I was talking with him on cell phone. It has happened before and it only happened when I talk with him.His family is very happy and you better know the condition of our villages located away from cities. I have passed them your advices and they are thankful to you.

    1. You are very welcome Mr. Pasha. Hope he continues to make a steady improvement.

      Personal Regards,
      Nitin Sethi, MD

  35. Dear Dr Nitin Sethi.
    I have passed all your advises to the family of
    Muhammad Hussain Khan Kakar and by grace of god a miracle is happening. The boy is improving and responding with a fast speed. Today they told me that he acted on my phonic asking as i asked him to blink eyes,rise his hand and move. He blinked eyes, rose his hand and moved his head. Another very important success that acting on my advise on controlling his fits and they are also successful like us. Epilopsy or fits of PVS or MCS is in my idea is mostly reaction of any pain,need or pscyclogical so we are using the technic of diverting the attention of the patient to somewhere else and meanwhile trying to know the reason like feeling cold or hot,hunger or thirst and others. Jawad Pasha is now a days with some throat infection problem and we hope for some early recovery. Hope one day you shall have some time to talk with us and family of Muhammad Hussain because it is very easy for us due to language. Thanking again for your kind attention.

    1. You are very welcome Mr. Pasha. Hope Jawad is doing well. I do speak Hindi fluently. I can understand Urdu well but afraid cannot speak it so well though. In any case I feel communication shall not be a problem. May I commend you on your English. I know it is not your primary language but you do get your point across well.

      Personal Regards,
      Nitin Sethi, MD

  36. I have sent you this link many days before and not like this, I am surprised. Jawad Pasha is going very well and he is improving. I am sure that he is among best one health wise in all MCS and PVS. I have to tell you a view. When a person goes in coma for more than 3 days,his care givers or peramedical staff is told that his side should be changed after 2=3 hours , It is correct but a little movement of arms and legs is necessary after every 15 minutes.I have to tell you another intresting event. I daily talk to Muhammad Hussain on cell and he is reported responding some what. Day before yesterday his sister told me that he was so exited that he started Fits and she tried to divert his attention but failed than she sligtly slapped him twice and than he stopped. We are now finding low cast but affective ways to meet this challenge for others specially for the people of countries like our. I am taking your much time . Injury of Jawad Pasha was very severe and doctors at Pakistan and Singapore told me that his survival is almost a miracle and no one was hopefull about his recovery. I don’t know what will be the result but I am sure our effort will be helpfull for others. Thanks again for your time and attention.

    1. Dear Mr. Pasha,
      as always it is good of you to write in and inform me about your son’s progress. His recovery it seems is gradual but steady. I agree with you in that it is hard to prognosticate about the outcome of patients like your son. Some of them do though make a remarkable recovery and from what I read you and your wife are doing everything possible. I shall post the link you sent me. That shall help to draw attention to Jawad and others like him.

      http://www.paklinks.com/gs/all-views/295291-pakistan-brain-injury-persistent-vegetative-state-patients-jawad-pasha-4.html#post6414934

      Please feel free to write in again.

      Personal Regards,
      Nitin Sethi, MD

  37. Thanx a lot,From last few days we are doing a new type of exercise. I and one Iftekhar (His friendly attendent) bring Jawad un standing position as his hands are on our shoulders. Then we turns him many times like’Thumka’ clock wise and anti clock wise.Than we bend him a little right ,left ,front and back and than we try to a sit stand exercise. This has given a very good effect on him.

  38. Dear Mr. Pasha,
    it is good to hear from you again. Getting Jawad out of bed, turing him frequently in bed and at times assisting him out of the wheelchair is always a good idea. This shall also go a long way in preventing pressure sores. Just be careful as you go about this as he remains at high risk for falls.

    Personal Regards,
    Nitin Sethi, MD

  39. Thank you Doctor Sahib.
    pressure sores were never a problem for Jawad Pasha but My five year round the clock experience may be some helpful to others.My first advice for eveyone is this that put yourself on place of a persistent vegetative state (PVS) or a minimally conscious state (MCS). You must suppose that he is conscious and than think what you need if you are on his place.PVS or MCS people should must be very afraid due to their disability,they should must be knowing that people who love him or her are arround and they are taking care of them.When a person goes in coma for more than 3 days,his care givers or peramedical staff is told that his side should be changed after 2-3 hours , It is correct but a little movement of arms and legs is necessary after every 15-20 minutes to maintain the blood circulation in his body even he or she is slept.
    I am looking for your view on this all. Thanx again.

  40. Dear Mr. Pasha,
    you do raise a valid point. Patients who are bed bound need frequent change in posture to present bed sores (decubitus ulcers). In the hospital setting this is usually carried out every 2 hours or so, the primary reason is shortage of personnel. Nurses are frequently taking care of multiple critically ill patients at the same time each with pressing needs. I usually request the family at the bedside to help out. They can do an excellent job in changing the position of the patient in bed frequently as also passively moving the arms and legs to avoid deep venous thrombosis.

    Personal Regards,
    Nitin Sethi, MD

  41. Thank you Dr Sethi.
    I think this has become a proper forum to discuss the issues related to persistent vegetative state (PVS) or minimally conscious state (MCS).
    An other issue is related to rehablitation of above said patients. In my view the abovesaid conditions are due to loss of motor function. Consciousness is not the basic thing. It takes perhaps years to the patient to show his consciousness but meanwhile he loses his all skills. I give you example. We started feeding by mouth to Jaead Pasha after about six months of his accident and within six months we reached at a point of one glass of water and a few biscuits but when we braught him to Singapore , Doctors after conducting different tests showed us that the food is going to his breathing portion.(sorry for my poor English)So they stopped us to feed by mouth and then he lost his habit of eating and it is very difficult to feed him by mouth.
    I think that a little practice of different movements may be suggested for the patients to keep their skills intact. It may be looking useless but it can be helpful.

    1. Dear Mr. Pasha,
      in disorders of consciousness such as PVS and MCS, consciousness is an important part of the whole equation. Recent research though has shown that these patients actually are consciousness they just cannot access their memory centers/ speech centers and so forth. Let me try to explain this better. Suppose a neural command has to go from point A to point B. To reach point B though it has to go via point C. Now if point C is damaged (due to brain injury/ hypoxia etc), even though Point A and Point B might be intact, the command cannot reach its final destination.
      That is what we feel happens in some patients with MCS and PVS, they are kind of there but locked out from assessing their centers of cognition, speech and motor memory.

      Personal Regards,
      Nitin Sethi, MD

  42. I am always thankful for your kind attention,If you feel sometime disturbing you may tell me. I want to tell you some more about Muhammad Hussain. He is too away from any city in a small unknown village. Will you believe that they have not seen a physiotherapist yet. They now have a tilting table for his standing and a wheel chair and at home some exercise told to them by me and a paremedical attendent of Jawad Pasha. Good news is this that the boy is responding and even some time obeying some command.The family now know you and is thankfull to you. The other great success is control of his fits/seizure on a very simple way as I told you befote.Jawad Pasha is a mature and educated man so he controls himself but Muhammad Hussain is too young so he often faces fits when he is emotional or in some trouble. Hope you will suggest to caregivers to try this method if there patient have problem of this sudo type seizure to study this idea.

    1. Dear Mr. Pasha,
      as always thank you for writing in and informing me about the steady progress of your son and of Mr. Hussain too. Seizures are common in patients with altered states of consciousness. At times they may be subtle and are not accompanied by dramatic motor manifestations (meaning that the body does not shake but the brain is still having seizures). We call such seizures as sub-clinical seizures or electrographic seizures (they can be detected with the help of an EEG). The trick though lies in differentiating seizures from other behavioral manifestations which may mimic seizures clinically. As you can imagine the treatment for the two differs, seizures warrant anti-seizure medications while behavioral manifestations may warrant other drugs such as sedatives.

      Personal Regards,
      Nitin Sethi, MD

  43. Thanks again Dr Sethi.
    You are a qualified doctor and I knew nothing about medical. To day was a great day for me. There was some infection in Jawad Pasha’s left cheek and that was swallowed. He was in trouble but the thing which made me happy that he reacted every time when touched. This was first time in five years. There were many troubles like this in this perioud but he never reacted. He was also laughing mean while because that was only way to him to show his feelings. And just now I asked that should I say thanks from your side to Dr Sethi. He blinked his eyes many time to yes. So thank you .

    1. Dear Mr. Pasha,
      your spirit and desire to help your son and others like him is very inspiring. As always I wish you and your family my very best.

      Personal Regards,
      Nitin Sethi, MD

  44. I am always thank full to you. Jawad Pasha is improving and he is hopefull and Muhammad Hussain is also responding. I think our conversation and your gauidance may be helpfull for many others.
    As I think matter of PVS and MCS is created due to latest medical facilities otherwise in old days it was like survival of the fittest. Only those patients could only survived who have less brain injury or strong enough to meet the injury.
    There is perhaps no medicine for brain healing . I have used myself homeopathic medicine many times and found them very effective but in this field that system is also not responding. There could be something in Hikmat,Ieowetheric or TCM. Have you listened about it?
    I also want to tell you about Dr Carina Eksteen of department of Physiotherapy,University of Pretoria S.A. She told us some exercises about neck holding and said that consciousness can be improved after neck holding. We found her instructions very usefull and looking for some way to get more instruction by her or any person who under stand.
    I am again thankfull for your kind attention.

    1. Dear Mr. Pasha,
      I am personally not aware of any complimentary and alternative therapies which have been found to be useful in patients who are in MCS or PVS.

      Personal Regards,
      Nitin Sethi, MD

  45. I am sorry but i forgot to ask you a thing. Can we try some drug or drink as an cxperiment. He is quite fit and healthy. There is no fear of fits now. And can we think of marrige if someone is ready?

    1. Dear Mr. Pasha,
      I would not recommend drugs/ drinks as an experiment. Ideally you should review all aspects of Jawad’s care with a doctor who can then advise you accordingly.
      As regarding marriage that is a very personal decision. There are many social and ethical issues which shall have to be carefully considered.

      Personal Regards,
      Nitin Sethi, MD

  46. Have to ad more .More tha 3 years ago a doctor at Singapore genral hospital have administered him some medicine and he was moving his legs and arms that time when asked but later he became more weak.At that time he very weak phsically and did not started smiling even. It was a loss to him at that time perhaps.

  47. Dear Dr Sethi
    Jawad is with exelent health.He is fully Conscious but we are total fail in achieving motor function. There should be some attempt. There should be some try to find a way.If you give me a link .I can send you his recent photos or video. He is perhaps more heathy than he was b4 accident. I am surprised that no one is giving any attention to this great achievement.
    Thanx for your time

  48. Dear Dr Sethi
    Jawad Paha is with exelent health.He is fully Conscious but we are total fail in achieving motor function. There should be some attempt. There should be some try to find a way.If you give me a link .I can send you his recent photos or video. He is perhaps more heathy than he was b4 accident. I am surprised that no one is giving any attention to this great achievement. M
    Thanx for your time

    1. Thank you for keeping me abreast of his progress Mr. Pasha. There is tremendous research underway to improve our understanding of PVS and MCS.

      Personal Regards,
      Nitin Sethi, MD

  49. Dear Dr Sethi.
    Is there any difference between coma and the trauma to MCS/PVS persons looked like in coma ? I have asked many and found that the people who went in coma for a long perioud do not become a MCS/PVS when they wake up. I am still finding a way for regaing of motor function.

    1. Dear Mr. Pasha,
      coma literally refers to any patient who has depressed sensorium/ alertness. There can be many causes of coma and many grades of coma. Some people are in “deep” coma and shall not respond even if given a deep painful stimulus. There are others who shall wince to pain and moan when stimulated. They too are in a way “comatosed” though we refer to them as stuporous or drowsy.
      PVS and MCS though are different conditions. No doubt these patients are comatosed.
      Patients in PVS have no meaningful interaction with the external environment even though they may have elimentary responses such as they may yawn and at times track with their eyes. They also maintain their sleep wake cycles.
      Patients who are in MCS have inconsistent responses. At times they may have some directed actions and follow commands albeit inconsistently.
      Recovery from coma depends upon the cause of coma. For example if the patient is comatosed because his blood sugar is too low (example a diabetic patient who has overdosed on his insulin/ diabetic medication), you give him glucose and he immediately comes out of coma. Others are not so fortunate such as a patient who has sustained severe head injuries.
      I hope that answers your question. I wish you all my best.

      Personal Regards,
      Nitin Sethi, MD

  50. dear, doctor Nitin Sethi,
    i am senior physical therapist & head physiotherapy department here in pakistan in armed forces institute of rehabilitationmedicine rawalpindi. Mr jawad Pasha is under my treatment regarding physical managment since last six month.well in my observation Mr JAWAD PASHA is improving in his cognitive function,giving a good response to verbal comond. and a very strange response in his protective mechanism,that i noticed a few days back when his nursing attendent try to bite him on his hand that was just in jok & Mr JAWAD was contineously saving himself by taking his hand away from that nursing attendent.further more he is very good in understanding any type of jok when some one make with him.

    1. Dear Mr. Naeem,
      thank you for writing in and updating me on the progress of Mr. Pasha. It is indeed good news that he exhibits protective/ defensive responses and moreover these seem to be directed. That certainly indicates a higher level of brain functioning and interaction with the surroundings.
      It is the hard work and effort put in by you, his other health care professionals and finally his parents that is helping him in his recovery.

      Personal Regards,
      Nitin Sethi, MD

  51. Respected sir,
    I am the elder sister of Muhammad Hussain.A brain injry patient.our familly is very thank full to you.i am always thank full to you for your kind attenation for muhammad hussain.I think Your conversation and your gauidance may be helpfull for US.As you know we are living in a village so we don,t have the facilliaties and in a such case it is so difficult for us.first six month we can,t understand what is going on then Pasha Uncle contac us and tell us the situation .You can,t belive here the the doctors did not tell us about his illness ,excersises ,feeding,urinary sys.and movments of his body.that was Pasha uncle who tell us his Illness proper name .And all those things which is nessceory.E.g movments,feeding etc.so with in a weak he responding us.now after 11th months of hiss illness his gernal health is better but not good.he is responding even now a days we are worried about his hands and right leg thats are moving very repdly.it is a difficult situation for us.But we are happy to see this.My english is not well due to less education.I hope you understant all this.THanks a lot once again.

    1. Dear Miss Khan,
      thank you for writing in and updating me on your brother’s health. Please stay in touch and I shall be happy to help out in any way possible.

      Personal Regards,
      Nitin Sethi, MD

  52. Dear Mr. Pasha,
    thank you for writing in. I would not say that coma whether “light” or “deep” is a way of natural brain healing. Usually coma signifies major dysfunction of the brain (either of the brainstem arousal system–which helps to maintain arousal and alertness or of both cerebral hemispheres-bihemispheric cerebral dysfunction can lead to coma).
    At present tremendous research is in progress in the field of disorders of altered consciousness such as PVS and MCS. Some of the exciting research has involved neurostimulation devices. Brain stimulation with the help of a device (think of it as a pacemaker). Preliminary studies involving a few patients has shown a gratifying response in some patients in MCS.

    Personal Regards,
    Nitin Sethi, MD

  53. Thank you Dr Sethi.
    I again repeat the matter.I don’t know much but i am asking this question from a lot of people but I could not find anyone who became PVS or MCS after being in coma aproximately more than a month.DBS Therapy is still in an experimental stage and even no points could be still finalised of pointing the device.One of my question is left.”Is there any device to communicate with a patient like Jawad Pasha?”
    Jawad Pasha is still recovering.You know that this progress can not be narrated much but can be felt.His genral health is wonderful.I feel that he could get some motor function very soon by as I feel with help of some alternate natural command system,Is there anything about this in books. I have a very little knoweldge through net only.Muhammad Hussain is also improving but I feel that his family is in other problems also because his father was only working man in the family and we knew that caring a PVS is a round the clock job.

    1. Dear Mr. Pasha,
      thank you for writing in and informing me about Jawad’s steady progress. Unfortunately there is no device yet which can help us communicate with patients in PVS or those in MCS at least consistently.

      Personal Regards,
      Nitin Sethi, MD

  54. Hi
    My brother suffered severe traumatic brain injury, about a month ago. The prognosis was very poor, but he is in his early twentys. He had a bilateral crainectomy. He now has a traechiotomy and is breathing on his own. I have been reading about the mcs state and feel like he could be in that state. Although he does move his limbs and squeezes our hands. We are trying to figure a way to communicate with him, by blinking his eyes or squeezing our hands. I have many questions regarding his state, but seem to get no direct answers as to whether this is temporary or permanent. His progression has been occuring daily and we are just at a stand point.

    1. Dear Evalyn,
      thank you for writing in. I am sorry to hear about your brother and I can understand your anxiety. It is tough for us doctors to prognosticate the family when their loved one has a disorder of consciousness.
      I shall be happy to answer some of your questions. Here is my email neurologistnyc@yahoo.com
      If you drop me an email, I can give you my office number and we can talk further.

      Personal Regards,
      Nitin Sethi, MD

  55. Dear Dr Sethi.Can you tell me that how can I know about other patients and their progress who gained consciousness but living without motor function.Jawad Pasha is still slowly recovering and we now often found him little like sparking type action for a very short moment.His body tone is also improving.I dont know the proper words but hope you can understand meanings. We know now that he tries to help us when we move him by making his body arms and legs hard but he has perhaps lost the sence of directions.His body movent has been better when I decieded to give him a little move after every 20-30 minutes as I wrote here before.Now i am also using this link as reference of his condition as this is becoming a continuous record of his condition. Looking to your further information. I hope your information will be helpful to many others.
    Personal Regards,

    1. Dear Mr.Pasha,
      thank you for writing in. You can surely use the interaction here to highlight the condition of your son (Jawad). My hope is that somehow you can have him assessed in a good neurological center so we can determine the extent of his neurological functioning. Have you approached any of the government and non-governmental organizations for assistance?

      Personal Regards,
      Nitin Sethi, MD

  56. Dear Dr Sethi,
    Thanx once again. Jawad has been admitted twice at Sinapore General Hospital and at very begining at Shafa International Hospital Islambad. I am sorry to say that At Pakistan actually no facilities are available for a PVS or MCS.He is a regualar outdoor patient at Armd Fources Institue of Rehabilitation Medicines Rawalpindi and going there daily but recieves only a little traditional physiotherapy there. There is no way to get any of the government and non-governmental organizations for assistance known to me. The point today I want to tell you that I have seen many videos of MCS at net . Some of them look better than Jawad in different functions but no one looks conscious like him.Just few minutes ago he came back from his routine night tour and he was put on a stand for standing.He saw me and started regurly laughing for a while instead of his routine smile. We can not know what did he remember this time but it encourage us.You know that what a great task to keep one a little hopeful and happy who is completely without motor function since last 5 years.Have you seen him at any site?
    We have a believe that keeping him healthy and fit will make one day a way for his becomming normal one day by grace of God. In begining all doctors were not sure about his surviving later they are having no hope of his any recovery but we were awn we are still hopeful.
    Personal Regards,

  57. Dear Dr. Sethi,
    My husband was stabbed in his heart by a co-worker at his work place,in July 2006. Well they were able to save him , but because he lost a lot of blood, whereby losing oxygen to the brain, he suffered an anoxic brain injury. His prognosis have been poor from the very beginnig. Well he is currently in a persistant vegetative state.
    It has been 3 years, and a very painful and heart rendering journey for me and my 3 kids. I live in Dallas Texas. The good thing is that he is fullly covered by workers compensation.
    His injury is in the cerebral cortex, according to the MRI and CT scans, there has been severe injury in that area.
    In the beginning, he would try to move his hands, but soon after he started to have some seizures, and once he was on the seizure medicines, his responses have been very less.And yes he has a tract, and is feed by a g-tube.
    Now he sleeps a lot, but we do exercise him daily with the range of motion exercises. We get him up everyday(whenever possible), dress him, and put him on his wheelchair, take him outside sometimes.
    His other complications are that he still has a hole in his heart, and the murmur is quite loud.
    Also he does have a bed sore, which is being treated with a wound vac.
    My question to you would be if there was anything else I could possibly do for him?
    Thankyou for your precious time, and your dedication..

    1. Dear Karishma,
      thank you for writing in to me. I am indeed sorry to hear about your husband’s condition and I can only begin to understood how tough this is for you and your children.
      Well I think you are doing all that you can to take care of him. Simple things like wound care (care of the pressure/bed sore), pulmonary toilet, physical therapy, and care of the feeding tube are all very important aspects in his overall management.
      I wish you strength and send you my very best. Please feel free to write in again.

      Personal Regards,
      Nitin Sethi, MD

  58. Hello Sir
    How r u?I am here once again for know about PVS and MCS.Sir my brother Hussain is Improving now but there is some problems by which we cant understand that is these imprvoments is with a motor function or….Now a days he is improving a lot for example he starts smiling and make some expersion on his face when he become angry.Last night when i give him a milkshake i ask him a question”hussain you know sidra(my married cousion)is coming from pheshawer tomarrow?”And unbelive able he move his head up and moving is eyes in a direction as to ask “what”he make this action two time but iam surprised so i cant tlak him again.after that night he make regullarly this action when some one asking him a question.Some tim he show great responce as whem i saw hiw up your had then i will put there a pellow so he up his head just for few mints.I just want to ask that how we know that his actions are not with a motor function?

    1. Dear Miss. Khan,
      it is indeed tough at times to determine whether the actions of patients who are in PVS and/or MCS are actually directed actions (meaning carried out purposefully by the patient) or are they just random (meaning that when you closely inspect these patients, they really have no meaningful interaction with their environment).
      A close neurological assessment of your brother can aid in this regard.

      Personal Regards,
      Nitin Sethi, MD

  59. Dear Dr Sethi
    How are you.Jawad Pasha is improving further with more smiles and impressions but nothing in motor function. I know now a few without motor function. One is more than 20 years old and one is 6-7 years old and they are so by birth. Is there any differene between them and Jawad ?
    Thanks again for your time

  60. Dear Dr Sethi,
    I have a very very wonderful news. Muhammad Hussain has started smiling and laughing and also some more movements even sometime changing his side on bed himself. His family is very happy and thankfull to you for encouraging. It sounds very good. Hope for some more good news. He is improving / recovering at very good speed.
    Thanks again for your time
    Anwer Pasha

  61. Thank you Sir
    I hope you have read about the new report about a PVS/MCS who remained 23 years as know as unconscious. Jawad Pasha appears much better to him. Where we can get some communication system for him ?

  62. Dear Dr Sethi
    Hope you are with good health.
    Jawad Pasha and Muhammad Hussain are going well. Jawad shows more responding and little better , Muhammad Hussain is going more fast but unfortunately facilities available to him are very less otherwise he could be more better.When Jawad was under treatment at Singapore his doctor suggested some stimulating medicines and during that period he was moving his arms and legs when asked but after stop of those medicine he came down.He was very weak that time, I think we shall try something now new because I am getting old and time is slipping.
    Thanks for your continuous sport.
    Regards,
    Anwer Pasha

  63. Hello Dr Sethi, Thank you for the article which gave me some more understanding. My mom was on a c-pac machine that was assiting he with her breathing. Because of the negligent nurse at the hospital who was weening her off the machine never came back until 25 minutes later. Upon her arriving back to my mom rooms my mom had already lost 25 mins of oxygen.It has been a month and my mom has not responded, she opens her eyes periodically. Is this a good sign on if she getting better.

    \

  64. No one deserves to live in such a state. In fact, I am certain that no one can honestly say they would choose to be kept alive in such a state when the possibility of any recovery is minimal if any. I personally know a friend who is in a vegetative state. His family members strongly believe that he is conscious (tracks people, mumbles, breaths etc.) even though doctors have clearly stated otherwise. This of course has lead them to keep him alive. Anyone who is not willing to let go of a loved one that is in such state is truly selfish. Although it may be unintentional, they are unable to take responsibility and make the decision to let go. This is either because they fear they will regret it, feel guilty, face other family members, or unable to live with themselves for making such decision. The fact is however, it is not about you. It is about your loved one. When I think of my friend I want to believe that he is not conscious. Why you might ask? He is confined to a bed with a body he cannot move, he cannot communicate in any way or have any sort of meaningful life. Instead his family members would hope that he is in fact conscious. I’m sure this make THEM feel better. Yet if he is conscious, I can only imagine how miserable he must feel. I do understand that there are people who although severely incapacitated can still live meaningful lives. Whether they be in a wheel chair, blind, mute, paralyzed, limbless, etc. The difference between such people and one in a vegetative state is that despite their handicap, they can communicate with the outside world, express their thoughts and feelings.

    1. Dear Caryne,
      thank you for writing in and sharing your thoughts. I shall let your words speak for themselves for I could not have said it better. I send you and your family my very best.

      Sincere Regards,
      Nitin Sethi, MD

  65. Dear Caryne,
    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

  66. Dear Mr. Pasha,
    thank you for writing in to me and updating me about Jawad’s progress. As always my best wishes remain with all of you.

    Personal Regards,
    Nitin Sethi, MD

  67. Thank you very much for the information. I guess my brother is aware sometimes. Now he laughs about jokes and movies. And sometimes it seems like he is crying, but with no tears. However he is still not able to communicate. I hope we can establish some kind of code soon so he can tell us what he needs. Best regards. Caryne

    1. Dear Caryne,
      thank you for updating me on his progress. Nowdays there are multiple modalities which can aid in establishing some sort of communication with patients like your brother. Though the first thing which is needed is to determine where exactly is the problem. Let me explain:
      He can comprehend (understand) but cannot talk. This is motor speech problem.
      He cannot comprehend but can talk (likely in this case his words shall not make much sense). This is a problem in the receptive speech centers.
      He can neither comprehend nor can he talk.
      A good speech therapist is a valuable asset. Has he had a recent speech evaluation?

      Personal Regards,
      Nitin Sethi, MD

      1. Dear Caryne,
        thank you for writing in to me. In people who are right handed (as well in majority of people who are left handed), the left cerebral hemisphere is the dominant hemisphere and that is where the language centers of the brain are located. Speaking in simple terms there are 2 major language areas in the brain. There is the motor speech area (also called the Broca’s area) which is situated in the inferior left frontal lobe. This helps in the motor part of speech (fluency of speech and so forth). Situated in the superior part of the left temporal lobe is the sensory speech area (also called Wernicke’s area). This helps in the sensory part of speech (ability to comprehend and so forth).
        So it is possible that a patient may have a problem in both these centers or just one center. In another words it is possible that your brother can comprehend (if not completely maybe he is able to understand somethings) but cannot speak.
        As for recovery of speech, that unfortunately Caryne is difficult for me to predict since I have not examined him and not seen his scans. It depends upon multiple factors such as the extent and location of injury to the brain.
        As always I send you my very best.

        Personal Regards,
        Nitin Sethi, MD

  68. Dear Mr. Pasha,
    that is wonderful news indeed. Your love and affection for your son and for Muhammad is apparent. It is your hard work that is culminating in these wonderful results. As always I send you my very best.

    Personal Regards,
    Nitin Sethi, MD

  69. Someone very close to me (late twenties), with a history of past seizures (one or two), was found several hours after having what we think was [a] status epilepticus, in a pool of vomit and blood (the former of which he aspirated into his lungs). We don’t know whether his heart stopped and started in the hours he was on his own, but he did go into cardaic arrest twice, once on the way to the hospital and once while there (for about 4-5 minutes). Since then, he has been on kidney dialysis as he went into renal failure, only opens his eyelids, does not react to external stimuli particularly voluntarily, does not speak or attempt to -or move, and we have been told that he has a 20% chance of waking up and having some semblance of a normal life, 40% chance of waking up and being institutionalised for the rest of his life, and 40% chance of never ‘waking up’ at all. This incident happened 3 weeks ago. I am aware that as time goes by without him waking up, the odds are increasingly stacked against him. (he is also on a PEG tube)

    Could someone else give me a rough prognosis at all? | am aware things do not look good, but have been told this past weekend that he has been running a fever, which they apparently think might be because he is experiencing some pain; is this really a ‘good thing’, that his brain might be processing/responding to pain, by way of a fever?

    I do not know at what stage they will start to really decrease his chances of any kind of recovery; 1 month? 3 months in this state?

    I am not a family member, so am obviously not as informed as they are, but am getting this information relayed to me BY the family.

    Could they ever, at any point, attempt to use the sleeping ‘drug’ Zolpidem, to try and wake him up at all? I have of course seen the stories about a percentage of PVS patients who woke up when they were administered with it.

    Also, since his eyes are open and it is not therefore a coma, are people who suffer non-traumatic brain injury less likely to come out of a vegetative or minimally conscious state (I do not know, if any, which he is being classified as, since it has been a day or two over three weeks) than they are likely to come out of a full coma? I have heard of people recovering from an extended coma more often than I have heard of people coming out of a PVS.

    Thank you so much.

  70. Dear Connie,
    thank you for writing in to me. Research into disorders of consciousness is going on at a frenetic pace and neurostimulators are been tried. There is always hope Connie. I send you my very best.

    Personal Regards,
    Nitin Sethi, MD

  71. Dear Mr. Pasha,
    it is indeed a pleasure to hear from you again and thank you for keeping me updated about the slow yet steady progress been made by both Muhammad and Jawad. I am glad that things are looking up. Please feel to write it and ask me anythuing regarding their care. As always my best remains with both of them.

    Personal Regards,
    Nitin Sethi, MD

  72. Dear Doctor,
    My mother, 76 years old, suffers from brain hemorrhage two months ago and had an operation to remove the blood from the brain. Since then, she has never awake. Occasionally she opens her eyes when we move her sleeping posture. She can move her feet, kicking a few times and yawns. I would like to know from you whether she can wake up again and become conscious. Doctor here says she is in vegetative state and would never be conscious. I know an old person who had the same problem but she can regain consciousness.
    Will my mother be awake again?

    1. Dear Johan,
      thank you for writing in to me. I have not examined your mother so I am afraid I cannot answer your question. Disorders of consciousness are at times tough to prognosticate. Your mother’s current doctor and neurologist shall be the most informed when it comes to your mother’s prognosis. A good neurological examination (when she is off all sedation), results of her latest neuroimaging (CT scan or MRI brain), EEG and evoked potential test such as somatosensory evoked potential (SSEP) shall all aid in determining her current level of consciousness and aid in prognostication.
      My best wishes are with you during these difficult times.

      Personal Regards,

      Nitin Sethi, MD

  73. Dear Mr. Pasha,
    make sure that he is not in pain. Sometimes when patients like your son are in pain they express it in the form of aggression and/or agitation. My advise would be to rule out simple things such as a bed sore, urinary tract infection, fever and so forth. As always I send you all my very best.

    Personal Regards,

    Nitin Sethi, MD

  74. Dear Dr Sethi
    Thank you for your kindness and continuous help.
    It is not pain or any other problem of this sort. We easily come to know when he is in pain.His body becomes stiff (Sakht) and his smiles become less and laughing disappears. In case of more pain it is changed a response some times like starting of Fits/Seizure and some time it is resulted to Fits/Seizure. Now we can easily know difference between the Fits/Seizure happening due to movements in brain and Fits from the other causes like pain or other psychological reasons.
    Seizure/Fits due to brain reasons starts showing symptoms two three days before like movement of teeth and moth water.(Dant peesna aur monh say jhag nikana) and a very important indication is change of temperature of left and right side of body. This is now sure some sort of anger or reaction now showing with others too perhaps when he is unhappy with one.
    A good news about Muhammad Hussain.
    Perhaps he is gaining some motor function. He now calls some one in home himself and lifts his foot up when his caregivers try for his walking.
    Thanks again for your time.
    Regards
    Anwer Kamal Pasha

  75. Hi Dr Sethi

    7 weeks ago my wife have cerebral encephalopathy due to some drug allergic reaction, no bleeding. 4 weeks in icu to control her condition, icp, seizures. now were at home, she has sleep wake cycle, yawns, shed tears, coughs out phlegm, swallow saliva, and she even moves her hands and legs when i pinch her in her hand as if she look toward where she was pinched. she is 27 years old. when i put cold towel in her cheeks she moves her head away. as ive researched VS PVS person does not feel pain how is it possible? does it mean shes on her way to recovery? she doesnt move volountarily, but moves both arms and legs when i pinch her any part of her body, and she gets startled whenever a loud noise or i clap my hands and its not corneal reflex which i notice ven her eyebrows move. and when i touch her areola when cleaning her its seem to be stimulated.

    1. Dear DJ,
      thank you for writing in to me. The diagnosis of persistent vegetative state is made after a due period of observation. This period of observation varies based on the clinical histiory and cerebral insult sustained by the patient. Like for example in patients who have suffered hypoxic ischemic encephalopathy the period of observation is shorter as compared to patients who may have suffered head trauma. Your wife needs to be evaluated by a neurologist or another doctor (neurosurgeon) who is skilled in neurosciences. Her current physician in conjunction with a neurologist shall be able to determine her disorder of consciousness and advice about prognosis.
      I wish her my very best. Please feel free to write in if you have any further questions.

      Personal Regards,

      Nitin Sethi, MD

  76. Dear Doctor,

    My ex-husband suffered a massive MI and cardiac arrest 3 1/2 weeks ago. It is unclear how long he was without oxygen. His body has healed but Neurology says they believe he is in a minimally conscious state, at time he follows commands, responds to pain and discomfort. They have not performed imaging tests. He is currently at Bellevue.
    I am looking for a rehab facility for this type of injury in or near Manhattan. Do you have any suggestions?

    Corinne

    1. Dear Corinne,
      I am sorry to hear this. Your ex husband needs special care in what is called a coma stimulation unit. Here are a few names I found for you in NYC. The Brady Institute in Jamaica Hospital Medical Center. Here is their number 718-206-7154. You may also want to call Helen Hayes. Here is their info:

      Helen Hayes Hospital
      Route 9W N, West Haverstraw, New York 10993
      1-888-70-REHAB | 845-786-4000

      All the coma stimulation programs have certain requirements which need to be satisfied before the patient is accepted into the facility.

      Stay strong. My best wishes remain with you.

      Nitin Sethi, MD

      1. You are an angel! Last questions: what are your thoughts on the JFK Medical Center. I have heard great reports.
        Also, regarding meds I have researched Amantadine, Zolpidem, and Apomorphine. There seems to be different protocols since he didn’t sustain a traumatic event (however in my view, there was clearly trauma to his brain). Neuro (the Resident) at Bellevue seems to be moving slowly. Any insights?
        All the best,

        Corinne

      2. JFK Medical Center in Edison, New Jersey should be good too though I have no personal knowledge if they have a coma stimulation/ skilled nursing unit Corinne. As regarding medications which you mention, most of the literature on these is from case reports (that is a case description of a single patient) who showed improvement after administration of one of these medications. The decision to try one of these medications shall have to be made by his physician. Traditionally patients who have suffered anoxic injury to the brain do not respond as well as the ones who have suffered traumatic injuries. So Corrine for that you shall need to speak to his physician.

        Nitin Sethi, MD

  77. dear doctor ,
    i was wondering do think there may be any hope for my sis who was declare pvs after she flatlined from high blood pressure, she only 23 , this happened about 2 1/2 weeks ago, now she opens here eyes and moves her arms and head ,this is really hard for me because she so young , she is also starting to breath on her own and can lift here legs , but she doesnt follow simple commands, the docs said here thamlmaus was damage and the brain stem is still good .

  78. Dear Sir,
    My father now I belive in a PVS his hearts stops during a surgery of removing his bladder, he got a cardial arrest and his hearts stops for 30 mins and he returns and all his organs are working and he is breathing by himself, today and after two weeks he coughed moved his lips and opened his eyes that happened in a minute all of us could not imagine we couldn’t believe it. And that happened also while my mum was rubbing his toes, till now me and my sister can not touch him we are praying and reading Qura’n we belive that God could send him back, of course all his brain cells are dead because of lack of oxygen for 30 mins. Can his brain cells can be send back to live after being deaf? I searched and I found there is a sleeping pills called Zpoldi or Ambien this pills do miracles and made lots of people to wake up after six years, is this real please help I can do anything in the world to bring my father back.
    Thanks,

    1. Dear Aya,
      I am sorry to hear about your father. There are a few case reports where in patients have regained function after a stroke or have had consistent demonstrable improvement in level of alertness (with respect to those suffering from a disorder of consciousness) after receiving Ambien (zolpidem) which is widely used here in the United States as a sedative-hypnotic drug used to treat insomnia. That said these are just case reports and this effect has not been replicated in larger studies.
      You should speak to your father’s doctors about this to get more information. Stay strong Aya. I send you my best.

      Personal Regards,

      Nitin K Sethi, MD

      1. Thanks alot Sir for your quick response, I also found out that opening his eyes this is not an indication for gaining conscious this is only a disorder or the so called reflectat, but about moving his mouth, is there anything we can do for him to come back any specific medicine we can talk to him we can move him.
        I know there is no way to come back but I dont want to believe.
        I try to keep you updated.
        Again thanks alot for your support and response. Really appreciated.

  79. Dear Dr Sethi
    Once again I am here , we are still looking for some good news from medical side . We are in our mission to maintain our Jawad Pasha . He is little more netter but no motor function yet . He faced another very serious Fits/seizure attack two weeks ago but now recovered from weakness caused by those fits . He try to talk now through breath ( sans) and some time visible but voice making is yet not possible . I think that a long term rehabilitation therapies could help him now at any good place , What do you say
    Thanking you for your always kindness
    Regards

    1. Dear Mr. Pasha,
      I am glad to hear from your end. I agree with you that Jawad shall likely benefit from continued physical, occupational and speech therapy. As always I send my best to him and your family.

      Personal Regards,

      Nitin K Sethi, MD

  80. “Patients who are truly in the PVS shall never recover any meaningful neurological interaction with the environment–this is by defination.”

    Is this really accurate? Persistent vegetative state is not a prognosis, but a diagnosis. While it may suggest a poor prognosis, there is no certainty with regard to long term outcome, and to indicate otherwise is a bit misleading. You also fail to differentiate between VS resulting from traumatic brain injuries and those resulting from anoxic injuries, which correspond to different timetables with regard to becoming distinguished as “permanent vegetative states,” which is yet another matter. That distinction is important when considering when and if to withdraw support. Not only that, but VS is misdiagnosed at a rate of 43%, according to some studies. Not a good recipe for absolute conclusions, particularly when delivered anonymously over the internet to individuals who have likely found your piece in a desperate search for answers.

    It is incredibly kind of you to volunteer your expertise in a forum like this, but it is also irresponsible to use it to take away all hope when recent work by people like Giacino and Schiff, for example, suggests that the medical community may be killing people. The odds are certainly stacked against those in a VS, but there is not enough knowledge of the neurological factors contributing to disorders of consciousness to deliver a one-size-fits-all prognosis based on one poorly diagnosed condition like PVS. Some do eventually emerge and go on to achieve a good quality of life. Some do not. Until this condition is better understood, one would be well served to hedge their bets, no matter how frustrating it may be for the family to hear and the doctor to conjure the words, “i don’t know.”

    1. Dear R Scott,
      thank you for writing it to braindiseases blog and I appreciate your comments. You have correctly pointed out the difference between persistent and permanent vegetative states. There is indeed a tremendous body of work which dwells on the various disorders of consciousness–minimally conscious state (MCI), persistent and permanent vegetative states.

      Persistent vegetative state is arbitrarily coined as a vegetative state present one month after the brain damage but does not imply irreversibility. Permanent vegetative state implies the prediction that the patient will not recover. Recent work though shows that we still do not have all the answers to properly classify and prognosticate patients who are in these states (and the outcome also depends upon etiology-anoxia Vs traumatic brain injury).

      We are still identifying the predictors of recovery of responsiveness in prolonged anoxic vegetative state

      What are the long-term outcomes of chronic minimally conscious and vegetative states–we still do not know.

      There have been recent attempts to probing consciousness with event-related potentials, EEG, special functional scans in the vegetative state. Do these patients feel pain and so forth.

      And finally there are some well documented cases of late recovery after traumatic, anoxic, or hemorrhagic long-lasting vegetative state.

      “Care more for the individual patient than for the special features of the disease–put yourself in his place–the kindly word, the cheerful greeting, the sympathetic look–these the patient understands” Sir William Osler (1849-1919). I personally have always stood by those principles as I practice medicine and so hope is always there.

      Personal Regards,

      Nitin K Sethi, MD

  81. Dear Dr Sethi,
    My husband has been in a vs since the 28; of July, after a cardiac arrest with only his eyes open and nothing else but now its a few days that if i put a finger in his mouth he will bite it .Is it possible that he is waking up?.

    Thank you
    Catherine.

    1. Dear Catherine,
      the boundaries between the various disorders of consciousness (minimally conscious state or MCS, persistent vegetative state and permanent vegetative state) are increasingly getting “blurred”. New tools like functional MRI (fMRI), event related potential and special EEG techniques are showing that at least a few patients who are characterized as PVS are actually responsive. So more longer follow up is now advised and if available some of these advanced imaging tools can help determine whether the patient is aware.
      I hope and pray for your husband. Stay strong and please feel free to write in again to me.

      Sincerely,

      Nitin K Sethi, MD

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