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:

1. Feeding using a feeding tube
2. Turning in bed to prevent pressure sores
3. Special bedding to help prevent pressure sores
4. Assistance with bowel and bladder relief using catheter and/or diapers
5. Management of breathing such as suctioning of secretions; this may include care for a tracheostomy tube
6. Management of muscle tone (excessive tightness of muscles)
7. Special equipment that may include a wheelchair or special bedding to help with proper posture and decrease muscle tightness
8. Management of infections such as pneumonia or urinary tract infections
9. 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.

Characteristics of the confusional state

  1. Disorientation (inability to keep track of the correct date and place)
  2. Severe impairment in attention, memory and other mental abilities
  3. Fluctuation in level of responsiveness
  4. Restlessness
  5. Nighttime sleep disturbance
  6. 6. Excessive drowsiness and sleeping during the day
  7. 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:

  1. Your family member’s current treatment team has had good experiences with the program when they have referred others there.
  2. The staff at the facility makes you feel comfortable, is accessible to talk with about your concerns, and answers your questions.
  3. The program and medical staff have experience working with the same kinds of problems that your family member has.
  4. 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.
  5. 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.
  6. The program provides education and training for future caregivers.
  7. 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:

1. Communicating with healthcare providers
Be sure to ask questions, share your observations, and express your opinions.

2. 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.

3. 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.

4. 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.

5. 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.

Posted on BrainLine March 25, 2010

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 © 2010 by University of Washington/MSKTC. 

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

Comments

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. 

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?

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.

I believe that there are three new ways to help people with brain injuries:

(1) Hypobaric chamber:  Gives the brain more oxygen, and therefore heals an injured brain with dramatic effect.

(2) Fish Oil INTRAVENOUSLY fed into the blood stream.  Again, it heals the injured brain with dramatic effect.

(3) Coconut oil. Heals the brain and reverses Alzheimer's disease.  If it can reverse Alzheimer's, it is powerful in healing brain injuries.

God bless you all.

Cynthia 

My 82 year old mother had a fall in the bathroom 10 days ago, fractured her shoulder badly and hit her head and face. Apparently no concussion or damage to the brain had successful surgery 1.5 hrs of shoulder replacement + 1.5 hrs of hard work by the anesthesiologist. Woke up after operation and improved over the next two days only then to fall into a deep sleep. MRI scanning and blood tests show no anomalies. But she will not wake up after now another 3 days of sleep. Doctors at a loss to determine the cause. My wife terribly distraught. Anybody with similar experience?

Very informative. Thanks

I'm praying for you.....I have a daughter your son's age.

I have recently been in touch with BIA of Wisconsin. I am at a loss for helping my son (28 Yrs old) find a family physician in the Applton area. We are 4 years post and have come to the conclusion that there really is no where else to go to get him help. He has a severe TBI. His nerosurgeon refused to put his bone flaps back in so we are always stared at and drs don't want to work with us, (aspirin dr). We are unable to have therapy because the progress doesn't meet the standards of medicaid / medicare. I refuse to let my son continue to loose what he has. He will not be housed in a nursing home. He is "in there" and i will continue to work with him. 

Anyone in the Appleton area know of a pcp who works with tbi patients please let me know

I sure understand what you're going through. My mom had bacterial meningitis that made her brain swell and had several mini strokes through out her brain...devastating. This happen back in April, she's out of coma but went into vegetative stage. I wish I could know if she has any chances of getting out of it. .

My mom, who is my best friend, had a significant stroke in November 2015, she has underlining dementia, which makes everything worse. That stroke left her with behavioral changes and loss of bladder and bowel control, but could eat, drink, walk and talk. A blessing. Well, yesterday she had a massive stroke. She was starting to move all limbs, I am not sure if these were voluntary or not, but I believe they were. When I asked her to squeeze my fingers, she pushed that arm and brought it up to her chest. They did put her on a ventilator to increase oxygen. Today they were going to do more tests, ween off the ventilator and asked us to take our time coming to visit since they didn't want us to stimulate her at all. It is so hard to see her like that. I am very very close to my parents and this is all devastating And bless you all, I am at a lost.

My brother had a stroke and I am unfortunately unable to be with him at the hospital as I live in another. All I know is what a sibling described after visiting him there. They described him as being "in and out" and resting and his speech is very incoherent. Is this the sign of a massive stroke and is he in a sort of vegetative state?

My father got sick (sepsis and mrsa) dr. Said probably no chance of recovery, only organ working was his heart! After two days the woman who called herself his wife said "she was tired, pull the plug " it was horrible to watch my father suffocate, I had to leave. Every day I wish I would have tried something, anything? There must have been a better way! My love goes out to all who suffer.

HBOT has a positive effect, try it my blog explains  https://mathewhomberger.wordpress.com

Hyperbaric oxygen therapy is 89.4% effective at healing anoxic brain injuries I am currently sitting in a wheelchair and have been for 4 years From a methadone overdose that caused me to get choked I remained in a coma 2 1/2 months after sucking the food I got choked on into my right lung I'm alright mentally and am still intelligent as I was but still need to walk I pray I get the help I need soon this happened to me at 17 and I'm 22 now we had a benefit for me but didn't raise enough bc oxygen therapy us not supported by my Insurance A lot more stuff happened to me but I don't really need to get into all that. Let me just tell you real quick a lil of what I went through because I do remember a lot ... At first I couldn't speak my mouth would move but no sound I was Cortically blind and to top it all off I couldn't move On emerging from the coma and I am 6'4" I only have 5,000$ and I need at least 15000 and I have a feeling that after so much time has passed I won't be able to walk again I've been through all therapies my advice to anyone who reads this get anyone who has had had a tbi abi or anyone with a brain injury the help they need best of wishes to you all and good luck

My sister is 38 years old she had asthma attack heart attack, with no oxygen up until 9 minutes is it any way that she will make it out of this, okay right now she's unconscious she has not been with us for about a week and a half,

My niece suffered a sort of seizure. Her heart had stopped before she was admitted to the hospital. It took about 40 min to make her heart beat again. Now she is in an vegetative state (almost 7 years now). Is there any new treatment anybody could tell me about? She is only 35 years old now and her mother is going through hell everyday...

I had to let my husband go in 2015 after he suffered 2 strokes and seizures.  He was unresponsive for 2 weeks after local hospital did not administer adequate meds to control the seizures.  He also had bladder cancer that could not be treated while he was in the coma.  He had a very clear advance directive so when they found no higher brain functions I elected for him to have palliative sedation and he passed painlessly and peacefully within 20 minutes.  It is a difficult thing to have to do and my heart is with anyone else faced with this terrible responsibility.  One never gets over it.

My prayers are with you and your family. My father is in vegetative state for more than 1 month now due to stroke with movement and no eye opening. We are still praying that he will wake up soon. Our hopes are with God

Hazel

My aunt is in a vegetative state after suffering a Subarachnoid Hemorrhage in Aug of `15. Only time will tell and I only hope that she is comfortable, not in pain, and dreaming of wonderful things. I feel guilty because I know she would not want to be like this.  You are all in my thoughts tonight and I send good vibes to everyone reading.

Has anyone recover from this vegetation state if so how long did it take ...and is there anything they can do different or take

I suffered traumatic brain injury after a coma, I was in coma for three months, I suspect being active afterwards is most important, not like a victim but try to be a person again, my website which covers many of my issues is http://mathewhomberger.wordpress.com

I found my mom unresponsive and not breathing 6 days ago. We did CPR until EMS came and they worked on her for about 20 min and finally got a pulse. When she got to the hospital she had pneumonia, sepsis from aspirating, and renal failure. She has had COPD for a few years now. They have the pneumonia under control but she is in a vegetative state. CT scans and EEG show normal brain function but she just will not respond to us. All the the medical issues are now under control except for the vegetative state. With all the brain scans showing normal brain activity I just don't understand why she hasn't responded yet. We are all praying that she will start to come back to us soon. It has only been almost a week so we are trying to stay positive. It is so hard to see your loved one going through this. It is so hard to understand and to know she would absolutely never want to live this way is even more difficult to deal with. If anyone can offer any advice, coping mechanisms, or just wants to share their experiences my email is kristygermany@hotmail.com. I am praying for everyone who is having to deal with this and I pray for your loved ones who are ill as well!

tissue plasminogen activator (tPA, also known as IV rtPA, given through an IV in the arm) may save your loved one from a non communicative state but it has to be given within 3-4.5 hours of a stroke MAX and your local hospital may not be able to keep it ready to go. Ask your local hospital and pharmacist if they can prepare a dose for you at all times, it cost like $3000 usd or so for one dose.  I am looking at moving to the countryside of Paraguay and trying to find out if tpa can be stocked somewhere nearby for my mother who had a stroke and may have another one, who knows.

My brother r has a multiple fractures and brain injury that required extensive monitoring and rehabilitation .. what is this ??

Prayers to all of you that have loved ones with TBI or anoxic brain injuries.  The love of my life suffered an anoxic brain injury on August 23 of this year after a failed tracheotomy while we were on vacation.  The hospital wanted me to remove her from life support after one week.  I prayed to God for guidance.  I did not remove her from life support. We were able to have the tracheotomy successfully done.  She has since been medi-flight back to our home state.  She is now off the ventilator and breathing on her own.  She follows commands inconsistently, and goes through sleep awake cycles, but she is alive.  I am looking at hyperbaric oxygen therapy as a way to re-stimulate dormant brain cells.  God is a healer!!!

My mother is 71 years old and she had suffered a cardiac arrest 5 years ago. As a result she lost oxygen to the brain and was diagnosed with anoxic brain injury. The MRI showed that the cortex of her brain is very damaged. The neurologists tell us that she will not recover from this vegetative state because her brain is too damaged.it is for 5 years that our family is serving her and we are very very hopeful that she will awake any time.inshAllah. quts32@yahoo.com

God Bless you! It's a devastating thing to experience in a friend or loved one

Dear same happened with my mom to, now she is persistent vegetative state. Most claim zolpidem work for comatose patients,but as per me its not true. She is having infarct at temporal lobe. All we both can do ,just take nice care of our moms. Thanks Ashwani India

My father has been in a minimally conscious state since 4 weeks.He suffered 3 major strokes and his entire brain has gone through good amount of damage.Since last week,my father is slowly gaining consciousness and following instructions but the recovery has been very slow.He is being fed through feeding tube and also has a tracheostomy tube.He was in the critical care unit for 40 days I.am very positive and believe things would change and his condition would improve.I am trying my best to make his life as comfortable as possible. I will pray for all the other families who are going through similar pain.

Reading all of your stories took me back to my experience with my father. He was the innocent victim of an assault that took place on May 15th of this year. He sustained traumatic brain injury, his spinal cord was detached from his brain stem and he was paralyzed from the shoulders down. He was on a ventilator which was doing all of the breathing for him and he had a feeding tube. The doctors told my family & myself that there was no hope for him and the best thing to do was take him off of life support. I, being his next of kin, made the decision to leave the situation in God's hands and support my father in any and every way possible. I went to the hospital every day for four months and talked to him, joked with him, told him stories from when I was growing up, bathed him, groomed him, read the Bible to him and most importantly, I prayed for him in hopes that he could hear every word I spoke to him and feel every act of love and kindness that showed him. The doctors were claiming that my father was brain dead and that he would die in two weeks, but he fought for four months and would respond to certain things as well as certain people who would go see him and talk to him. I mean, he wouldn't talk or squeeze our hands, but he would cry when certain people would go see him or talk to him, he would follow shadows and if his eyes were closed and we called his name or walked in the room, he would open his eyes. If the nurses positioned him a certain way and it made him uncomfortable, he would push back or move his leg(s) back to the position that it was originally in. He would respond to pain and tickling of his underarms, stomach and feet. I truly believe that my father fought as long and as hard as he did because he knew that I was there with him every day and he didn't want to let me down. Three days before my father passed away, the doctor came in his room and was talking to him, asking him questions and he looked at me and said, "he's beginning to respond to my commands, he hasn't done that since he's been in the hospital". I had noticed myself, but could never get the nurses or doctors to confirm what I was seeing, so him telling me that made me feel like I wasn't seeing things because I wanted to see them. My father passed away on September 9th of this year, but if I had to spend the entire four months in the hospital with him every day all over again, I would. I want to encourage those of you who are in similar situations to stay strong and encouraged in knowing that God is in control and that everything you do to support your family member, friend or loved one, is not in vain no matter what the outcome may be. Appreciate the time that you have with them, make every day with them count. Don't talk to them or treat them any different than you would have if they weren't in the situation they are in. Tell them how much you love them and encourage them to continue fighting the good fight. They're still here and fighting for their life for a reason. I pray for strength, courage, piece of mind and a sound heart for all of you as well as your family member, friend or loved one who are living similar situations. Here is my email address if any of you need encouragement, prayer or a friend to talk to. God bless! proudmommyof386@gmail.com My name is, Stephanie

My father was the innocent victim of an assault that took place on May 15th of this year. He was kicked in the back and flew face first into the concrete. He sustained traumatic brain injury, his brain stem and spinal cord were instantly disconnected upon impact. He was on a ventilator, had a trach and a feeding tube for four months. The doctors told my family and myself that he was brain dead, but he would respond to certain things as well as certain people. He wouldn't talk or squeeze our hands or anything like that, but he would cry when certain people would go see him and talk to him. When the doctors and nurses would move him a certain way, he would push back at them with his feet or reposition his leg(s) back to the position that it was moved from. Three days before my father passed away his doctor came in his room and was talking to him, trying to get a response and he looked at me and said, he's beginning to respond more than he ever has. That gave me so much more hope because he was responding to us in certain ways too, but the doctors and nurses never seemed to acknowledge it. I share my story to say this, don't give up on someone that you love no matter how bad or hopeless a situation might seem. Doctors told me that my father would die in two weeks and he hung on for four months! I spent every single day with him and talked to him, sang to him, listened to music with him, told him stories about him & I from when I was growing up, bathed him, groomed him and most importantly, prayed for him and read the Bible to him every single day in hopes that he heard and felt every act of love & kindness that came from me. I believe my presence is what kept him going. Unfortunately, my father succumbed to his injuries on September 9th of this year, but I would do it all over again if I had to. If you're in a similar situation, I encourage you to stay strong, pray and most importantly, never give up no matter what the outcome. I guarantee you that everything you do, is not done in vain. If anyone may be going through a similar situation and need prayer, words of encouragement or a friend to talk to, here is my email address: proudmommyof386@gmail.com Take care & God bless!

My grandpa 87 one day was slumped over and couldn't move and by the time ambulance came he was able to smile raise his hand and one arm slightly drifted down.but he passed the other stoke test the ambulance guy asked him to do. But they still brought him to the hospital and next day he's in a deep sleep and won't wake up after couple days they said he had a stoke on both sides of his brain and 3 siezers in a row. After a week feeding tube is put in still no contiousness or anything. 4 days later the doctor says there taking tube out that his intestine isn't working.and that they assume he is in pain so the give him pain meds. And that they gotta make him comfortable and wait . I don't want them to take the tube out I belive he can get better. Please prey for him

Struggling with life as so many others in this same position of loved ones in varying stages of consciousness. 2 years post injury and i still research, pray and look for treatments for my son. When I gave Jamie 10 mg of zolpidem he spoke and said i missed you mum. When give very large doses of fish oil this aided the swelling and allows signals to get through. My son is classed in a permanent vegitive state. He has extensive brain injury and is cared for by myself at home. He was unable to protect his airway and required constant suction. After starting madapar for Parkinson he now has swallowing control and no longer requires suction. If anyone is interested in any of the treatments I've tried or researched for Jamie my email is Daphnejean_F@hotmail.com if anyone would just like to chat or bounce ideas around I'm good for that too. If anyone is interested in seeing a man with no brain activity speaking you can go to Jamie Manuele facebook page. The EEG reports are also on his page stating distinct lack of cortical activity. Jamie had a harrowing journey these past 2 years. He has suffered many set backs and further injury to his brain twice with the over draining of his brain from a shunt/value issue resulting in his brain tearing from his skull and his head filled with blood. He has been abused by staff and neglected by hospitals but still he struggles on. When God calls my boy home i will feel relief for the end of his suffering and enormous grief for the loss of my beautiful son. However everyday is different with many different ideas and feeling. This condition has so much unresolved grief attached to it, sometimes it feels like the day before the funeral but no one has died. No one has the answers we seek as no one knows enough about the human brain. Miracles are all around us. While there is life, there is hope. Don't listen to closely to how things are supposed to progress as you'll find yourself believing this is as good as it gets. If the brain believes it, the body can do it. Don't let any one speak negative in front of your loved one. Don't let anyone define them. Never let anyone say they can't do something. They kept saying Jamie was blind. But now they relies they were wrong. He says it's still blurry but he 100% sees. I pray for your strength because this is the main component of helping your love one in progress. Daphnejean

My husband is suffering with bacterial meningitis. He also has ITP. He is also a paraplegic from a spinal stroke on January 8, 2015 and he got sick from a bed ulcer on his tailbone. He got meningitis and sepsis and MRSA. He was in a stupor in ICU for 6 weeks and now a week in a room. They told me he is brain damaged and would not survive. He did not have an MRI because of pacemaker. He now opens eyes and sometimes looks panicked and is just now following with his eyes and opening his eyes when spoken to. He cannot use his arms and hands now and cannot yet speak. He was on ventilator for 20 days then a trach/vent and still has trach but breathing without vent FOR 10 days and 30% oxygen but still does not respond to commands. His bed ulcer had caused him osteomyelitis and he is on multiple antibiotics and antifungals. He is a pastor. I would appreciate your prayers for a miraculous healing as you have experienced. We have only been married a year. His first wife of 46 years died of ALS in 2012. He cannot have any vaccines because he had Gilliam barre 15 years ago. He is 71. Thank you.

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