Facts About the Vegetative and Minimally Conscious States After Severe Brain Injury

Mark Sherer, Ph.D., Monica Vaccaro, M.S., John Whyte, MD, Ph.D., Joseph T. Giacino, Ph.D., and the Consciousness Consortium, Model Systems Knowledge Translation Center
Facts About the Vegetative and Minimally Conscious States After Severe Brain Injury

Severe brain injury causes a change in consciousness. Consciousness refers to awareness of the self and the environment. Brain injury can cause a wide range of disturbances of consciousness. Some injuries are mild and may cause relatively minor changes in consciousness such as brief confusion or disorientation.

The most severe injuries cause profound disturbance of consciousness. Twenty to 40% of persons with injuries this severe do not survive. Some persons who survive have a period of time of complete unconsciousness with no awareness of themselves or the world around them. The diagnosis given these people depends on whether their eyes are always closed or whether they have periods when their eyes are open. The state of complete unconsciousness with no eye opening is called coma. The state of complete unconsciousness with some eye opening and periods of wakefulness and sleep is called the vegetative state. As people recover from severe brain injury, they usually pass through various phases of recovery. Recovery can stop at any one of these phases.

Characteristics of coma

  • No eye-opening
  • Unable to follow instructions
  • No speech or other forms of communication
  • No purposeful movement

Characteristics of the vegetative state

  • Return of a sleep-wake cycle with periods of eye opening and eye closing
  • May moan or make other sounds especially when tight muscles are stretched
  • May cry or smile or make other facial expressions without apparent cause
  • May briefly move eyes toward persons or objects
  • May react to a loud sound with a startle
  • Unable to follow instructions
  • No speech or other forms of communication
  • No purposeful movement

Persons in coma or vegetative state require extensive care that may include:

  • Feeding using a feeding tube
  • Turning in bed to prevent pressure sores
  • Special bedding to help prevent pressure sores
  • Assistance with bowel and bladder relief using catheter and/or diapers
  • Management of breathing such as suctioning of secretions; this may include care for a tracheostomy tube
  • Management of muscle tone (excessive tightness of muscles)
  • Special equipment that may include a wheelchair or special bedding to help with proper posture and decrease muscle tightness
  • Management of infections such as pneumonia or urinary tract infections
  • Management of other medical issues such as fever, seizures, etc.

What happens after coma and vegetative state?

When people start to regain consciousness, they may:

  • follow simple instructions from others such as, “Open your eyes,” “Squeeze my hand,” “Say your name,” etc.;
  • communicate by speaking words or by indicating yes or no by head nods or gestures; and/or
  • use a common object in a normal way such as brushing hair with a brush, using a straw to drink, holding a phone to the ear, etc.

Persons with brain injury transition through the period of unconsciousness and subsequent stages of recovery at a slower or faster rate, largely depending on the severity of injury. Those with less severe injuries may transition through these stages more rapidly and some of the stages described here may be poorly recognized or not occur at all. Those with very severe injuries may stall at one or another stage and not be able to make the transition to a higher level of recovery.

For persons with more prolonged periods of unconsciousness, emergence from unconsciousness is a gradual process. Coma rarely lasts more than 4 weeks. Some patients move from coma to the vegetative state but others may move from coma to a period of partial consciousness. It would be very rare for a person to move directly from coma, or vegetative state, to a state of full consciousness.

Persons who have shorter periods of unconsciousness likely had less severe brain injuries initially. Consequently, they are likely to go on to make better recoveries than persons who had longer periods of unconsciousness.

Traumatic brain injury refers to damage to the brain caused by external force such as a car crash or a fall. About 50% of persons who are in a vegetative state one month after traumatic brain injury eventually recover consciousness. They are likely to have a slow course of recovery and usually have some ongoing cognitive and physical impairments and disabilities. People in a vegetative state due to stroke, loss of oxygen to the brain (anoxia) or some types of severe medical illness may not recover as well as those with traumatic brain injury. Those few persons who remain in a prolonged vegetative state may survive for an extended period of time but they often experience medical complications such as pneumonia, respiratory failure, infections, etc. which may reduce life expectancy.

People who have a slow recovery of consciousness continue to have a reduced level of self-awareness or awareness of the world around them. They have inconsistent and limited ability to respond and communicate. This condition of limited awareness is called the minimally conscious state.


Characteristics of the minimally conscious state

  • Sometimes follows simple instructions
  • May communicate yes or no by talking or gesturing
  • May speak some understandable words or phrases
  • May respond to people, things, or other events by:
    • crying, smiling, or laughing;
    • making sounds or gesturing;
    • reaching for objects;
    • trying to hold or use an object or
    • keeping the eyes focused on people or things for a sustained period of time whether they are moving or staying still.

People in a minimally conscious state do these things inconsistently. For example, one time the person might be able to follow a simple instruction and another time they might not be able to follow any instructions at all. This makes it difficult to distinguish the vegetative state from the minimally conscious state.

While in a minimally conscious state, people need extensive care similar to that needed by people in a vegetative state.


Emergence from the minimally conscious state

Once a person can communicate, follow instruc tions, or use an object such as a comb or pencil consistently, they are no longer in a minimally conscious state. Some people remain minimally conscious indefinitely, but many improve. The longer a person remains in a minimally conscious state, the more permanent impairments he or she is likely to have. This is because vegetative and minimally conscious states are caused by severe damage to multiple brain areas. Following emergence from the minimally conscious state, people almost always experience confusion. Sometimes people move directly from coma to this confusional state.


Comparison of Coma, Vegetative State, and Minimally Conscious State

 

Coma

Vegetative State

Minimally Conscious State

Eye Opening

No

Yes

Yes

Sleep/Wake Cycles

No

Yes

Yes

Visual Tracking

No

No

Often

Object Recognition

No

No

Inconsistent

Command Following

No

No

Inconsistent

Communication

No

No

Inconsistent

Contingent Emotion

No

No

Inconsistent


Characteristics of the confusional state

  • Disorientation (inability to keep track of the correct date and place)
  • Severe impairment in attention, memory and other mental abilities
  • Fluctuation in level of responsiveness
  • Restlessness
  • Nighttime sleep disturbance
  • 6. Excessive drowsiness and sleeping during the day
  • Delusions or hallucinations

As with the vegetative and minimally conscious states, the rate and extent of recovery from the confused state vary from person to person. However, almost all people who reach the confused state go on to make further progress. The main factors that determine the eventual degree of recovery are the initial severity of the brain injury and some types of additional medical problems. The shorter the time the person is in the confused state, the better the eventual recovery will be. Mild medical complications such as sleep disturbance or urinary tract infection may prolong the confused state but do not necessarily influence the final outcome.

Once the confusional state resolves, people are usually much better able to pay attention, orient themselves to place and time, and retain memories for day to day experiences. Nevertheless, they are very likely to have some significant cognitive problems such as impaired memory or slowed thinking. These cognitive problems are likely to continue to improve as time passes. Some people make limited progress, while others make a good deal of progress.


Patterns of recovery after very severe brain injury

Some individuals rapidly emerge from coma and briefly remain in the minimally conscious state before recovering a higher level of consciousness with mild impairments. Others may have a longer period in the minimally conscious state after emerging from the vegetative state and then usually have a greater degree of long-term impairment. Occasionally, persons remain in the vegetative or minimally conscious state for an extended period of time and, in rare cases, these conditions may be permanent.

What treatments are used with people in the vegetative or minimally conscious state?

Currently, there is no treatment that has been proven to speed up or improve recovery from the vegetative or minimally conscious state. However, there is general agreement that the primary focus of medical care is to prevent or treat any factors that might hinder recovery (such as hydrocephalus, a build up of fluid on the brain, or use of sedating drugs for other conditions), and to preserve bodily health (such as treating infections or stiffness of joints). Medical facilities and clinicians vary in the extent to which they try various treatments such as medications or sensory stimulation to promote recovery of consciousness. Because the amount of recovery from disorders of consciousness varies so greatly, it is difficult to judge the value of these and other treatments outside of research studies. You can inquire about your physician or program’s philosophy about using these types of treatments.

Transitions to different levels of care

At various points in the process of recovery, persons in the minimally conscious or vegetative state may receive care in a wide range of settings. Initially, the person with severely impaired consciousness is most likely to be treated in an acute care hospital where the focus is primarily on saving his/her life and stabilizing him/her medically. Once that is achieved, the next focus is on recovery of function to whatever level is possible. Sometimes this happens in an acute rehabilitation hospital, which provides a high intensity program of rehabilitation services, including physical therapy, occupational therapy, speech and language therapy, recreational therapy, neuropsychological services and medical services.

Some patients do not transition from the acute care hospital to an acute rehabilitation program. These people may go directly to a skilled nursing facility, a sub-acute rehabilitation program, a nursing home, or even home with family. Persons discharged from an acute rehabilitation program usually go to one of these places as well. Skilled nursing facilities, sub-acute rehabilitation programs, and nursing homes vary widely in the quantity and quality of medical management, nursing care, and rehabilitation therapy services they provide.

Many factors influence decisions about where a person with severe impairment of consciousness or other severe impairments may go after discharge from the acute care hospital or discharge from the acute rehabilitation program. Some of these factors are the person’s medical condition, health insurance coverage and other benefits, the person’s ability to tolerate rehabilitation therapies, the doctor’s philosophy about where people should go to continue to recover after severe injuries, the family’s ability to care for the person at home, the family’s wishes, and practical matters such as that the distance the family has to travel to visit the person at the facility.

The names used to describe levels of care and the settings in which they are provided, vary across the country. It is helpful to work with a social worker or case manager in the facility where your loved one is currently receiving services to plan whatever transitions are necessary. Do not be afraid to ask questions to make sure that you obtain the information you need to help you make the best possible decision.

Things to look for when considering a setting to care for your loved one:

At various points in the process of recovery, persons in the minimally conscious or vegetative state may receive care in a wide range of settings. These include in-patient rehabilitation facilities, skilled nursing facilities, and long-term acute care facilities. The following are some considerations for selecting a place for care:

  • Your family member’s current treatment team has had good experiences with the program when they have referred others there.
  • The staff at the facility makes you feel comfortable, is accessible to talk with about your concerns, and answers your questions.
  • The program and medical staff have experience working with the same kinds of problems that your family member has.
  • The facility is informed about the specifics of the care your loved one needs and is able to meet these care needs. You can have a role in ensuring that a detailed nursing plan of care is developed.
  • The program includes case management to assist in planning for the next level of service, whether it is transition to a rehabilitation program, a facility for long-term care, or home.
  • The program provides education and training for future caregivers.
  • The program uses specific procedures to measure progress.

If support services can be arranged, some persons in the minimally conscious or vegetative state can be cared for at home.


Thoughts from families who have been there

Family members who have a loved one in a minimally conscious or vegetative state have identified a number of important issues:

  • Communicating with healthcare providers
    Be sure to ask questions, share your observations, and express your opinions.
  • Managing medical equipment and supplies
    It is important to be knowledgeable about your loved one’s equipment and supplies, and know how to communicate with the companies who provide these items.
  • Providing care
    Family members often provide some of the care for their loved ones. The amount of care you provide will depend on your role in providing care (this can range from providing most of the care yourself to simply directing the care provided by others), the people such as sitters, attendants, nurses, and family members who are available to help you with providing care, the setting (this could be your home or a skilled nursing facility), and the guidance you receive from health care providers. It is desirable to obtain as much training as possible to provide whatever elements of care you chose to provide and are able to manage. These might include bathing, grooming, bowel and bladder management, mobility, range of motion, and other medical issues that your loved one may have.
  • Learning about financial resources
    You may initially feel overwhelmed when you start to learn about various financial resources that may be appropriate for your loved one. However, with patience, persistence, and some help from others, you will be able to figure out which programs apply and find your way through the application processes.

    Programs you will want to learn about include:

    • Healthcare programs such as Medicare and Medicaid.
    • Income replacement or financial assistance programs such as SSDI (Social Security Disability Insurance), SSI (Supplemental Security Income), or possibly disability insurance policies that you loved one may have had through work.
    • Services to help with community living such as state agencies that assist people in these areas.

    It might not be possible to find someone who knows everything about how to access these various services and programs. The key is to keep asking questions and following up to make sure that you and your loved one get all the benefits that are available. People who may be helpful to you are social workers, therapists, case managers, the local social security office, your state brain injury association chapter, family members or friends who are disabled or who have family who are disabled, or the human resources (personnel) department at your loved one’s employer.

  • Guardianship
    Since your loved one is not able to fully make decisions for himself or herself, it may be helpful for you, or someone else, to be appointed guardian. This may make it easier to handle medical decision making or management of your loved one’s financial matters. If you think that your loved one may need to have a guardian appointed, you will need to contact an attorney to get assistance. Guardianship can be reversed when it is no longer needed.

How to interact with your loved one who is unconsciousness or at a low level of responsiveness

The most natural way of interacting is to talk to your loved one, even though he or she may not respond or understand. Simple things like telling him or her about recent events in your life, what is going on in your family or neighborhood, or the latest news might make you feel a sense of connection. Talking with your loved one about what you are doing as you provide care can increase your comfort with the process of care giving. For example, telling your loved one that you are going to move his or her arms and legs to help prevent joint tightness might make you feel more comfortable with this task. Only do this “range of motion” type activity if you have been instructed to do so by the doctor, nurse, or therapist.

Physical touch is another way of having a sense of connection. Some family members have said that the act of giving a massage or applying lotion to the hands or face helps them to feel close to their loved one. It is also important to avoid the risk of overstimulation as this may result in rapid breathing, tightening of the muscles, grinding of the teeth, restlessness and fatigue.


Taking care of yourself and other family members

Family members of a person in a vegetative or minimally conscious state often feel a sense of loss or grief for the relationship they had prior to the injury. There can be a number of ways to cope with these feelings. A person in a minimally conscious or vegetative state may make very slow progress or go for periods of time with no apparent progress. Sometimes keeping a journal of the changes you have observed may be comforting. This may give you a chance to look back and see ways in which he or she is more able to respond than he or she was at an earlier point in time.

Having a loved one who is in a vegetative or minimally conscious state can be physically and emotionally draining. Managing this alone can be too much to ask of one person. It is important to rely on support from others, looking to existing supports and developing new ones. You might find help from supports you have relied on in the past, such as family, friends, and religious groups.

Other resources to consider include support groups, support agencies, and the Internet. A good way to learn more about these possible supports is to make a contact with the Brain Injury Association of America’s National Brain Injury Information Center (www.biausa.org, 1-800-444-6443) and obtain contact information for the closest state brain injury association (BIAA) chapter. Health care providers such as doctors, therapists, social workers and others can be good sources of information about supports available to you.

Even the most committed caregiver needs to have some private time. If your loved one is at home, this can range from having a friend or family member give you a 2 hour break to go do something for yourself to having full time caregivers for a week or having your loved one spend a brief time in a nursing care facility or hospital. If your loved one is still in the hospital or living in a nursing care facility, having a rotating visitation schedule can give you some breaks while giving other friends and family a chance to spend time with him or her.

When your loved one was first injured you were likely to be in crisis mode, focusing on the problems and putting the rest of life on hold. As time goes by, you will need to shift from crisis management mode, and begin to take care of the concerns of everyday life such as paying bills, maintaining relationships with other family members, and taking care of your own physical and mental health. While it is natural to focus on your injured loved one, other members of your family will have needs too. For some people, formal counseling with a therapist or member of the clergy can be an important part of making adjustments to life changes that have occurred as a result of your loved one’s injury.

While caring for a person in a vegetative or minimally conscious state is an enormous challenge, use of appropriate resources, as described above, can be a big help. Each person will respond differently to this challenge, but almost everyone can cope and move forward. Many family members have a deep sense of personal satisfaction in making life as comfortable and pleasant as possible for a loved one who has sustained a severe injury.


VS-MCS brochure authorship and acknowledgement:

Written by: Mark Sherer, Ph.D., Monica Vaccaro, M.S., John Whyte, MD, Ph.D., Joseph T. Giacino, Ph.D., and the Consciousness Consortium. Members of the Consciousness Consortium include:

  • JFK Johnson Rehabilitation Institute, NJ (Lead Center)–Joseph T. Giacino, Ph.D., P.I.
  • Moss Rehabilitation Research Institute, PA (Co-Lead Center)–John Whyte, MD, Ph.D., P.I. and Sooja Cho, MD, Site P.I.
  • Methodist Rehabilitation Center, MS–Stuart A. Yablon, MD, P.I.
  • Braintree Rehabilitation Hospital, MA–Douglas Katz, MD, P.I.
  • Sunnyview Hospital & Rehabilitation Center, NY–Paul Novak, MS, OTR, P.I.
  • Bryn Mawr Rehab Hospital, PA–David Long, MD, P.I.
  • Texas NeuroRehab Center, TX–Nancy Childs, MD, P.I.
  • Fachkrankenhaus Neresheim, Germany–Bernd Eifert, MD, Ph.D., P.I.

Acknowledgements: Funding for writing and publication of this brochure was provided by National Institute on Disability and Rehabilitation Research grant #H133A031713 (A Multicenter Prospective Randomized Controlled Trial of the Effectiveness of Amantadine Hydrochloride in Promoting Recovery of Function Following Severe Traumatic Brain Injury).

The Brain Injury Association of America (BIAA; www.biausa.org) provided feedback from the consumer perspective for the content of this brochure and is assisting with dissemination of these materials.

Several family members of persons with TBI generously gave their time and valuable insights to assist with the writing of this brochure.

Posted on BrainLine March 25, 2010. Reviewed July 25, 2018.

Sherer M, Vaccaro M, Whyte J, Giacino JT, & the Consciousness Consortium. Facts about the Vegetative and Minimally Conscious States after Severe Brain Injury 2007. Houston: The Consciousness Consortium. Copyright © 2018 by University of Washington/MSKTC. 

Please check the MSKTC site for any recent updates on this article.

Comments (189)

my son age 49 at the time had had his 7the stroke 3 in total in 2027 march 17 2018 he had his 8th stroke was admitted to the nearby hospital where we were told he was in a coma when we believ ed he wasin a pertinent vegetated state while there he had a lot of things go wrong respitory distress just to name for one instance he was transdfered to a very nice facility nearby for one where he is now (he entered the facility)where he can shake his head yes or no to questions asked of him he can laugh he can move feet toes legs fingers arms something he couldn't while he was at hospital his family is very pleased with the drs and nursing staff for being there since 7 months hes a FIGHTER1

What about a person who has been in a minimally conscious state for 3 years, what is the prognosis of their recovery or will they be able to fully recover when they are around the mid 50s?

Is there anything the family members can do to help?

This may sound very very strange, but I'm feeling very lucky right now. I have been reading the comments from people who have close relatives going through varying degrees of brain damage and the effects it's having on them and their families. My father has just recently had a massive heart attack, which doctors believe may have induced a stroke. My dad's heart was stopped for about an hour and his brain deprived of oxygen for all that time. The emergency services attended very quickly, and after working on him for a long time, they managed to re-start his heart. They assisted his breathing and got him off to hospital. After assessing him in hospital, the doctors told us that dad had suffered irreparable brain damage and there was no hope of survival. He was breathing on his own and had had an oxygen mask on. The first time I saw dad once they had got him sorted, it was a huge shock as I could see the catastrophic damage that had been done to him as a result of such a major heart attack. My sister was very upset as she had performed initial CPR until the paramedics arrived. She said dad looked so peaceful when her and mum first found him, and they had thought they were too late as he had passed then. Now they had brought him back, and his body was under so much strain. His lungs sounded like they were full of fluid (because they were) his chest would rise and drop dramatically with every breath, he never regained consciousness throughout the time. He seemed to have an odd reflex type movement; he seemed to jump suddenly and sometimes would groan. He looked distressed; his body was working incredibly hard, there was no brain response to any test the doctors did. My dad was 80 years old, had always been in reasonably good health and this had happened so very fast. When I saw my dad, I told him it was ok to go, I willed him to give in to it and slip away because up to now he had led a good active life, unhindered by disability and I knew if he did indeed survive this, his life would be constant care, and he would hate it. I work in the care sector, and I have seen some long drawn out deaths which are very distressing for the patient, and very distressing for the families despite doing everything you can to make them as comfortable as possible. Twelve hours after being admitted to the hospital, my dad's dramatic and labored breathing suddenly calmed and he took his last breath, finally slipping away with all his family around him. I truly feel this was the best outcome for my dad. After caring for some people who have survived heart attacks and strokes, seeing how their daily struggle can affect the quality of their lives, I didn't want that for dad, and I knew he wouldn't want it either. I think it is a valid consideration to listen to the doctors and nurses who see this kind of thing on a daily basis, consider what you would want if it were you on that hospital bed. You know your loved ones better than anybody; some want to go on living no matter what, some would say they would rather pass than live like that. I look after one lady who is in her 90's, and she has made it clear she does not want a DNR in place because she doesn't want to die, and on the flip side, my husband has told me he would rather i "switch him off" than let him live needing constant care. For me with this very recent event with dad, I questioned what was the kindest thing to do? Instinct was to resuscitate, but dad had essentially died, peacefully in his bed, we then got him back, saw him appear to suffer for a further 12 hours and die again! I am hoping and praying that he had no awareness of the last 12 hours in the hospital, but unfortunately, nobody knows if he did or didn't. Those 12 hours were the longest of my life and probably of his too, but as deaths go, it could have been a lot worse, so I am grateful. It makes you think about what family member would want in these circumstances and to let people know what you would want also. This takes the pressure off the surviving family members as they will be confident that they are making the right decisions on your behalf. Nobody wanted dad to die obviously, and its very sad understandably, but I know he would rather it happen like this than suffer for months or years with severe physical and mental problems associated with brain damage. I know he can now rest in peace

Really thoughtful and well-written. I’m sorry for your loss but it sounds like you have made peace with your dad’s passing.

Hello and thanks for sharing your story. A week ago on Tuesday, my BF was struggling to breathe and I called 911. He passed out s few minutes before EMS arrived. I watched them work on him for at least 20-30 minutes before they took him out. After arriving at the hospital, they said his heart stopped for about 40 minutes and that he has brain damage. They put him on ice for three days hoping to preserve any brain damage but unfortunately it did not work. Due to lack of oxygen to the brain, it caused some brain cells to die and swelling of the brain. The brain is pushing other parts of the brain and has affected the brain stem. No response to pain and doctor say no hope for recovery and need to take him off of the ventilator. I wish he could hear me. There are a lot of things I needed to say. We were just laughing a few minutes before.

This article / brochure written by Dr. Mark Sherer, Ph.D., is very informative. He has covered many aspects not just the person affected, but the pain suffered by the relatives and friends in the process of the treatment and caregiving, so elaborately .
My sister is in minimally conscious state for the past 45 days. She is off the ventilator. Just Praying for miracle to happen.

My 81 yr old, VERY healthy dad went out to blow snow on Feb 1, came inside afterward perfectly fine, and in the middle of a sentence with my mom, he just fell forward on his face with full cardiac and respiratory arrest. My mom, who's had 2 hip replacements and a knee replacement, nonetheless dropped to the floor, turned him over as quickly as she was able (took almost 5 minutes), and launched CPR until the paramedics arrived and broke down the door (she couldn't get up off the floor alone). The ICU doctors said that he'd had a catastrophic anoxic event and didn't have 24 hours left. After 48 hours, they claimed that he would not survive the week, and recommended making him a DNR. Mom said not a chance. 12 days after the attack/stroke, dad started opening his eyes a bit, but was completely paralyzed from the neck down and had no reflex responses.

The doctors discharged him and recommended a hospice to let him die "humanely"... Again, we refused and transferred him to a rehab. it has now been over 6 months, he has gone from comatose to a persistent vegetative state, and now he is able to keep his eyes open for hours, his hands and legs move independently but not in any apparent intent, he can visually track family (but seems to prefer to ignore medical staff), and gives facial expressions that inform us that he understands what we say and if it is sad, he has cried tears when told.

I asked him 2 weeks ago for one thing for my birthday... a smile... and when I walked into his room that morning, he gave me one, as best he could with left paralysis, but it was the first smile since his stroke! Unfortunately, unless he exhibits a blink reflex, none of the doctors at his rehab will believe or admit that he is improving, and are still pushing for hospice.

I refuse to give up but am getting frustrated, as he will soon be discharged from this facility because they don't admit his improvements and call him terminal, and this location is the ONLY one that has trach care needed (for his problems with lots of respiratory secretions) within 3 hours of home. I cannot drive due to vision issues, and losing 6 hours of my time that should be spent with him isn't acceptable, but I don't know what else to do!

Sorry, I meant to post a positive message about how doctors don't know everything yet, not complain. Just know that if you love the person who has been injured, and give them all the support that you can, they can come back farther than others might believe.

Thank you for your comment and best wishes for your dad and that you are able to find appropriate care for him within a reasonable distance. I have a friend who is young, only 47- she suffered a heart attack last June and has severe anorexic damage, as much as I've been able to glean, as her family has been very secretive about the whole thing. When I visit, which is difficult, since I don't have a car and it's hard for me to get there before visiting hours end, she seems very much alive to me. She cried when I told her "we gotta get you the f**k outta here." The next time I visited, she closed her mouth (which normally hangs open) to kinda suck on yellow gummy bears. Only yellow. I tried other colors/flavors and other kinds of candy, but she wasn't interested in those. I KNOW she's alive in there and her mother is super wealthy and as far as I can tell, has not so much sought a second opinion, fMRIs, nueropsych support, massage therapy, physical therapy etc. They just leave it up to Medicaid. I don't know for sure, but bnb I don't believe they consistently interact with her to stimulate her mind and let her brain rewire those connections if possible. It's killing me to watch this go on, I want to scream!

I really appreciate your comment about the impact loved ones can have on the prognosis of patients with persistent VS. I truly believe that being there, massaging shoulders or calves, reminiscing out loud, retelling old stories, playing familiar music, and asking them to respond to you does a world of good. Don't give up on them if you see signs of life. My friend's eyes are usually open although they don't track or focus on objects or faces. But I think if her family that visits almost every day would work with her and request that she look at things or blink in response to questions she would have come a lot further in her recovery.

I am Health Care Proxy for my friend. He had his aortic & mitral valves replaced. He had 12 hours of surgery, He is mostly in a vegitative state for 16 days. Liver & kidney problems, dialysis, feeding tube, tracheotomy. What are his chances ? Do people come out of those long term specialty hospitals? I am ignorant of this whole thing. He was supposed to be in the hospital 7 to 10 days, and he is still in ICU 16 days later?

My dad fell down stairs 1/12/2018 he is 68 years old. He had surgery to relieve the pressure from the bleeding a few hours after the fall. The ICU doc said if death was 10 his injury is a 9. He was in ICU for 2 months with no significant improvement and a poor prognosis. They moved him to a sub acute trachea care center, he is in a MCS he has been in the facility for a month. They are trying to wean him from the ventilator. He has started to show some improvmemt like more time spent with eyes open and seemingly tracking but not really following commands yet. When this initially happened the docs after about 2 weeks were trying to get us to let him go, we refused .. it's been hard but it feels good to fight for him and give him a chance but the choice is personal. They want to move him to a nursing home but we rather he come home since the quality of care will likely be poor.. the other option is a TBI rehab if they get him off the ventilator. I will update this post next month.

Please update

Hello there,

I m in same situation like you. Can you please let me know how your dad is recovering. Hoping for the best for you.

Please update me on his continuing care and improvements

Dear SCR,

My father who is 77yr old going through same situation now. I can completely relate to your situation and would like to know any latest developments.
How is your father now? Has he recovered?

My mother-in-law had the “whipple surgery” for pancreatic cancer on 2/15. The cancer did not spread to other organs but the entire pancreas had to be removed and was deemed a successful surgery. They gradually stopped the anesthesia drugs and took the ventilator off to attempt to get her to breath on her own. It took about 30-60 seconds according to the nurses to notice she stopped breathing. They intubated her and placed her back on the ventilator. Prior to removing the ventilator, she was responsive and coming in and out of consciousness..able to recognize family members, nod etc. The following day she declined and fell into a deeper state of unconsciousness. Concerned that she still hasn’t woken up, a neurologist confirmed she had Tissue hypoxia and that is the reason she has not woken up. We are awaiting additional tests to find out the extent of the brain damage and causes. I hope this makes sense as I’m so distraught right now. I will continue to update. Thanks to all that have shared their difficult stories.

Hi everyone, My Aunt had an asthma attack followed which she had an cardiac arrest we reached hospital in 4mins and to revive the hearth it took them 5 to 6mins, doctors tell she has an hypoxic brain injury due to cardiac arrest, we are hoping she will recovery from it but she is still in deep coma she has little bit of senses and eyeball movement she doesn't open eyes. our family is in very tensed state, relatives suggest removal of ventilator support as no progress has been seen in her condition so far and no chances of survival but i strongly feel that she will come out of coma. I would like to know the view of the survivor of hypoxic brain injury or there families to reply or email me so that i would guide my family and relatives not to pull the ventilator support from my Aunt.

Please email : meershahif@gmail.com or reply the comment.

Awaiting for the reply

Regards,
Meer

I'm praying for your family please pray for mine my sister has been in this state for 3weeks because the amniotic fluid after birth poisoned her body may God be with us

My healthy vibrant 82 year old mother fell three weeks ago this Saturday. I THINK she may have been dizzy having just stood up from the table but what I DO Know is that she stood up, took a step, paused and fell straight backwards. She slammed her head on the floor - it sounded like a weight hit the hardwood floor. I ran to her side and she was wincing in pain for approx 25 seconds then suddenly she had a massive stroke right before my eyes and died.
Needless to say, I am devastated and I can't help replaying the happening and looking for clues as to why she fell. I can only imagine that hitting her head so hard caused a brain bleed which then caused the stroke.
I would really appreciate an understanding of what may have happened to her.
Mom took a low dose med. for high blood pressure and one of the side effects noted on the bottle is dizziness. She took no other Rx meds, just vitamins. Her GP recently told her she had A-Fib but did not provide her any information, did not prescribe any RX to minimize stroke possibilities, or send her to a cardiologist for care.
What could possibly have caused her to fall?
I know knowing doesn't change that she is gone and I know I should be grateful that at least she isn't lingering in the hospital with brain damage but I feel learning what happened would help me cope with the loss of her. I am not sleeping thinking about the happening constantly. What happened????? I can't make sense of it. Can any of you help?

Unfortunately, intermittent dizziness upon standing is common among all age groups at certain levels of fitness or the lack thereof. Coupled with a medication that lowers the blood pressure, it is likely that she momentarily lost her balance from sudden dizziness, as you noted.

Once she struck the ground, there was likely immediate damage done to the occipital lobe of the brain and/or the brainstem, at which point she may have already been gone. What you witnessed after was unlikely to have been experienced consciously in any capacity, as the likelihood of a woman her age retaining full consciousness after such a blow to the back of the head is very slim. The brainstem is where breathing and other vital functions are maintained, so it's likely she was knocked unconscious and her body, for lack of a better word, simply turned itself off due to the trauma.

Painless, though it may not have looked as such. She has found peace now, and I hope that you are able to find peace in the future. Loss of such magnitude is impossible to erase, but the grief will lessen. Be well.

Hello, My husband had a ischemic stroke right side. Doctors said he sustained   significant damage. Reading this article has helped me to understand the process he is going. He now can open his eyes and follow you around the room by looking at you but no facial expression. It was very hard to see my husband un able to recognized me as his wife, is been only 21 days  ago. I just hope he be able to pass the minimal consciousness stage which I think is were he is at right now. I really hope he remember our children. Thank you for the article. Does anyone have a experience with this type of injury?

My wife is in the ICU right now and I believe she is in the vegetative state. It has been less than a week. She was weened from sedation, approximately 48 hours later she had very small of eye movement and some response that our doctors and nurses describe as reflexes but has only begun to open her eyes. She holds eyes wider and seems to be progressing rapidly. My advice for you is to pray for healing. Speak and think only in positive outlook. Do not use terms like "I hope" or "need" or "can't" only speak as if you already have or the situation you want already is. You don't any more need because you already have and can't. Cause can't never could. You can do what you believe you can do. And read the article again so you can absorb the info and comply as much as possible.

My brother-in-law is going through the same at the moment.. i know your post is almost a year ago. But i am looking for answers.. My BIL had brain haemorrhage two weeks ago and he was sedated all this time or call it induced coma. He has been weaned from the sedation but as yet hasn't opened his eyes. I haven't asked too many questions with his wife who is already so disturbed but is there a time limit within which time they are supposed to open their eyes after weaning or do we know exactly when they are supposed to be doing this or do we wait forever for him to open his eyes. I am wondering what would be the quality of life he would be having after all what he has been through after all it was his brain but the rest of the organs are in perfect condition. Just very worried and concerned for him and his family. Thank you

Thank you for your story and positive advice.

Thank you!!

So glad for you. My prayers are with you and your family.
We are having a similar situation. My mom who is 67 had brain injury due to hypoxia and is in Coma for the last 24 days. She is having very small eye movement and some response, but doctors are saying those are reflexes. The doctors are saying there is no possibility of a meaningful recovery. At her age, it is impossible.
Would you mind sharing your wife's age and what you can say about my mom's condition from your experience what you went through.

Amen Sister!!!

Thank you for posting this valuable resource. I found myself in a minimally conscious state following a massive cerebellar stroke. I was aware of the comforting presence of my wife and children. I was further comforted by my Mennonite brother and  nephew praying over me... but was not inclined to fully wake from the minimally conscious state. I found this in my search to understand what was going on with my mind. There was one thing that brought me back. For my entire life I have been compelled to arrange things; in my childhood, my Dad brought me hardware to arrange and containers and drawers to put it in. That is how it started... but organizing things relaxes me; it isn't stressful; when it is done I'm happy. In rehab I had received many cards, some signed by whole groups of people, and I asked a visitor to arrange the cards on a shelf in my private room. They did that, but the cards were not arranged right. It was my compulsion to arrange those get well cards correctly that returned me to the present. BTW, I'm stumbling around without assistance following my stroke. I can do everything I did before, but some things are very hard. I'm looking forward to a long life. (I'm 72.)

My mother is 62 and has been on medication that makes her fatigued and dizzy. My father came home three days ago and found her laying in the hallway, covered in blood, asking for my grandfather to help her (who has long been deceased). They have taken her St. Vincents here in Birmingham, AL. It appears she had hit her head, probably due to a fall, causing bleeding in the back of her brain and head. The bleeding has stopped, but she is in a vegetative state. She moans, randomly smiles, and moves without purpose but can not follow commands. She does not react to sounds, but does open her eyes here and there, although she does not follow movement or lights. This is the third day, but there has been no improvement. The two neurologists assisting us told us that they are simply waiting for her body to naturally absorb the blood, that surgery would be too risky for her age and that it is unnecessary. They said that she should regain consciousness in the next week or so. I'll leave important updates as they come. It's heartbreaking to see a loved one like this, but this article has helped us understand what stage she is in and how her recovery process will look like, thank you so much for this resource, God bless.

This article is very helpful. My sister had a sudden cardiac arrest at home last Tuesday. This is Thursday. She is 44 years old. We're not sure how long she was deprived of oxygen, but EMTs arrived  fairly quickly and got her heart started again. She is still in ICU and will be moved hopefully today to a different hospital where they plan to do more tests. I don't know all that they have done, but they are using therapeutic cooling right now. Her temperature is not going down as far as they like, because she also seems to be fighting a fever. After reading this, it looks like she is in the vegetative state. Her eyes are open sometimes and closed others. She doesn't look at anything or track objects. Her heart is beating on it's own, but she is on a ventilator. She fights the ventilator sometimes to try to breathe on her own. I would like to read comments from others who have experienced this with family members. It's very hard not knowing how far she might come out of this, or if she will. 

Hello, hope your sister is recovering well. My husband (52 years old) had a heart attack a week ago at home while he was asleep. Thankfully I was in the bedroom when he went under cardiac arrest so I was able to call 911 immediately. My 2 sons were also home so they put him on the floor directed by 911 operator. 10 seconds later cops knocked at the door so they did CPR for about 3 minutes till paramedics resuscitated him, They said he was dead for 15 minutes I think it was less. His heart is doing much better after a stent was placed in his heart, he is off the ventilator and breathing on his own,
He opens his eyes but doesn't make contact, he moves his arms and legs, he's not talking.
i see that your post is from Feb 2017, please share if she's now interacting with the world, if she is aware of the people around her. Thank you.

My BIL in similar condition. Can you please tell me how your husband is doing now?

We're going through this right now with my brother. I know it's been almost a year that you posted this. How did it go for your sister?

Hi Everyone, as many here I had to experience the fall into a coma and consequent vegetative state (1 year) of a dear friend of mine. At that time we were impressed with the importance of maintaining a contact with the patient through regular visits and phone calls (with the support of the nurses). We decided we had to do something about this and we created an audio/video communication app dedicated to these patients and to those that have to deal with them. Feel free to check our Website and please let us know if this tool supported you and your families too. (www.FamilyPlug.Healthcare)

I have a 37 year old son that went into cardiac arrest two years ago. I don't know how long he was out, paramedics managed to revive him and rushed him to the hospital. He had shut down completely, liver and kidney. He had been 100% dependent on a pacemaker since the age of ten.  Doctors mentioned there is no brain activity, kidney and liver shut down. No sense in doing anything if there is no brain activity.  His aunt prayed over him and he started moving his eyes, squeezed my hand, and he moved his fingers. Told the doctor she said it was reflexes. Then, when he kept doing it on command, they decided to do the pacemaker. He had dialysis for a week, has sclerosis of the liver. Bottom line is keep the faith, I still have my son after two years.

64 yr old male enters hospital with kidney issues and pain, ends up puking and aspirating early AM in hospital room and is now in ICU almost 5 days from time of "hypoxia brain damage" and no response to pain stimuli or sound or light. Blinks on his own, awake and sleep stages - has heart beat and is over breathing the ventilator - my biggest fear is that we make a decision too soon but not sure what to do next, seems like the hospital we're at is not a good place for Nero and I'm starting to realize they didn't do all the things other people have discussed as part of their treatments - How long should we wait to see if he improves?

Hello everyone, for past few weeks I have been reading everything about coma, vegetative state, etc. My dad had a major cardiac arrest. His heart stopped for 25 min. They resuscitate him and finally came back. He needed stems at his heart so that has been done. The doctors have put him in a induced coma. After one and a half weeks they tried to stop everything. Cutting the story short... now is 5 weeks. He opened his eyes, moved his hand and legs, smiles but there is no consciousness yet! We have fought to get an EEG and waiting for the MRI. The neurologist will assist and hopefully give us some good news. He has progress every day. Every day is a new move or a cheeky little smile. I just hope he will be conscious soon because this is draining. He is in a vegetative state I believe? He reacts at every noise around so I'm not sure if is not classed as minimal consciousness? God bless everyone with this problems. It hurts so much :(

My dad had a major heart attack at home. My brother commenced CPR until the ambulance arrived. He went 40 minutes without oxygen. He had surgery and a stent was inserted. We were told he might not make it through the night. He was in induced coma for 1.5 weeks. He now had aquired a hypoxic brain injury. He unfortunately does not know me or his grandchildren. Hes a completely different person. Not my dad. What I struggle with is all research surrounding at home heart attacks is that only 5% will survive and people who do survive have some type of brain injury. My dad would not want to live like this. Nor do we as a family watching our father detoriate in front of us while physios and doctors try to make dad walk. I love my dad. But the outlook for my dad's life now is awful. He's going to a nursing home. He will need 24 hour care. At 62 years of age. I'm so thankful we can still hold dad's hand. I question the doctors who saved dad's life... what life will dad have? I'm struggling that dad should have passed away and after 40 minutes without oxygen. I do no believe he should of been saved. Am I selfish for thinking this way?

No. I have been struggling with almost the same situation. Similarly my father had a cardiac arrest at his house, 30-40 minutes of CPR, brought back in the ICU after a week, but diagnoses with hypoxic brain injury. He has been in an acute care facility for the past three months, slowly getting weaned off the ventilator. I feel like I am in a different reality compared to the rest of the family. I don't think this is anything that my dad wanted. I am so scared that he will end up in a nursing home with minimal abilities. I feel like the rest of my family is being selfish. I don't think they are respecting my father's wishes.

My dad was diagnosted with gbm 2 years ago. He had 2 seuizers last sunday. He has not waken up since. They saw multiple blood spots in his brain. It is absolutely devastating to see him like this.

This is an incredibly difficult thing to watch your loved ones endure. Disheartening and frightening. So my heart goes out to those who may be going through this at this time! We lost our daughter last year because of a severe brain injury due to Hypoxia. Dispersed brain death left her in a coma for an extended period of time. We loved her very much and are heartbroken. If you are a loved one looking for answers, I pray for the best possible outcome.

My daughter struggled with anorexia for 4 years. It became a severe mental illness and at age 21 not only did she stop eating but was drinking too, while in a very fragile state. A friend also brought over 'spice' to smoke. By the next day she suffered massive seizures, died and was resuscitated and then was in a coma. She was put in a sub-acute facility (her accident happened while on vacation away from home and our home town didn't have a sub-acute) in Southern California. We had to move there for 1 year to be near her hospital. After 1 yr we brought her home and have been caring for her 24/7 for almost 6 years. Her trachea came out, but she still has a feeding tube, bowels don't work, and she remains non-cognitive, vegetative. The girl we raised is gone but her Spirit is still here. She's like a 6 mo old baby and so we 'play' with her and embrace what is now with joy and peace to keep a quality environment for us all. We trust in God and do not look backward. We accept what is bit always believe miracles are possible I'll be 60 in a couple months, my husband almost 68, so this is a big job for us for the rest of our lives....but home is where hope is in our control. We pray for everyone within this site (I read many of your stories) as we totally feel for each of you. Take care of yourself and find joy in the midst of the storm 💛

I can relate to everyone's condition. My mom is more than a year vegetative, fed thru NGT and on tracheotomy. Totally home cared. I missed my mom so much. My relationship with my mom is so much deeply rooted. Now our home is so quiet, dark, and no activity.

We can lift each other's burden thru prayers we can get in touch via email if anyone is available. Through small contribution in our experience I know we can make a difference in someone's life.

Hello guys.. ..my dad is in vegetative state for 8 months. ..do u have any idea about conscious level after these months?

My daughter suffered a almost total shut down from Diabetic Keto Acidosis. Kidney function was at 4%, coma for 23 days, thereafter a rehabilitation for another 4 weeks, released to my home. I put my life on hold, my career on hold (or rather closed it down). As she recovered slowly, now 2 years later, still cognitive impairment, behavior issues, violent thoughts.  Somehow being her caregiver for 2 years, she has decided she was going to hate me to the point of being verbal to others on how she was going to kill me and my dog because he barks to much. Now I need mental health counseling. Trying to understand the brain damage, the change in her.  It is just so horrific.  The grief and loss is like my old daughter basically died when she got sick. Now this another person inside of her.  Who can't take this personal, the daughter who once loved me now decided somehow in her faulty brain she now hates me.  I know it's not about me, it's about her, her recovery, her wellness. Just looking for information on how the brain works or thinks after such traumatic brain injuries. There was alcohol and drug, as she was a career and single party girl.  She was already exhibiting some extreme mood and behavior changes prior to the DKA. What changes along the line and how a brain could hate someone who only loves you.  LVD

My 62 year old father went to the ER on June 10th to get his swollen foot checked out. He did not have diabetes and was relatively healthy except the high blood pressure and cholesterol meds he was taking. During the couple of hours that the doctors were trying to figure out what is wrong, his foot started forming large blisters and turning dark. They rushed into surgery. It turns out he had sepsis due to necrotizing fasciitis (the so-called flesh eating bacteria) on his foot. While debriding the infected tissue, my father suffered a heart attack. They amputated the leg above the knee and worked on reviving him. They say he coded for 45 minutes but finally got a pulse. He got moved to the SICU and was in coma for 5 days. When he finally opened his eyes, he exhibited no consciousness. The neurologists told me the anoxic brain injury was "global" and that he'll never regain any level of consciousness. He was breathing on his own so i had them remove the breathing tube. The neurologists were not 100% correct, because my dad did regain consciousness. He recognized me, my kids, his siblings etc and even though his speech was severely impacted and we couldn't understand clearly what he was saying, he did try to talk and could communicate by nodding his head. He was even able to feed by mouth, despite the neurologist telling me this will not be possible. So those of you out there in despair by what you hear from the doctors, there is always hope! Just keep praying. My father ultimately passed away on July 7th. I miss him every day but I thank God for the extra month that I got with my dad.

Hi everyone, I have a relative who suffered a TBI almost 2 years ago and was diagnosed as Persistent Vegetative State. Yet after a few months of his injury he deliberately was responding, using his hands, thumbs up etc. however was not offered any rehabilitation due to his diagnosis as the OT who carried out his assessment did not get consistent responses.  There is no doubt that he has full understanding, laughs at jokes, cries at sadness, expresses all emotions as anyone without a brain injury.  He has gone through periods of responding using his hands, turning on command, lifting his limbs, but is losing this and the will to live as he realizes there is no help, even for simple common medical issues.  The medics/social services made everything so difficult as they had a plan for residential care and would not admit that he understood.  After continuously fighting, he eventually got home, and is now being cared for by family but he is not eligible for any services such as physio, nor any equipment to assist.  It appears due to sheer ignorance to his condition he gets left to suffer.  I have endless amounts of electronic recordings demonstrating that he understands, and every relative, visitor and even nurses are now aware of this.  He is now, understandably experiencing panic attacks, yet no help with this either. It is absolutely heart rendering to observe this suffering.  Is there anyone else in this situation.  I would like to publicize this story as I feel as if it is so wrong not to treat, yet allow to live without even ensuring comfort. Are we alone or is this common practice?

My fiancee has anoxic brain injury. It has been a year yesterday. I never give up hope and I hope nobody ever does on there loved one. The brain is tricky and you never know love is also a tricky thing

My heart goes out to everyone on here. My husband suffered a TBI almost 13 years ago. He lives at home with me and has since he was released from the hospital. I will never give up hope as long as he is breathing. He is in a vegetative state and has been the whole time. I talked to him all the time and pray he is still in there. I loved him so much.

God bless you and give you strength.

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