Facts About Vegetative and Minimally Conscious States After Severe Brain Injury

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Please remember, we are not able to give medical or legal advice. If you have medical concerns, please consult your doctor. All posted comments are the views and opinions of the poster only.

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.

I am dealing with this now, which is very disturbing because doctors refuse to believe it. They say he has no cortical function even though he shakes his head yes and no to me, and tries to talk, but they gave him a trach when I don't think he needed one. He had a cardiac arrest in the hospital where he had gone from rehab for a peg tube. They made him so sick from negligence, mistakes, lack of care. it has been devastating

You keep doing what your doing . Nothing is impossible if your willing to do the work. Some Doctor’s and nurses forget that we are human and the human body can prevail with time and work. I believe he can get to a comfortable point where he will and you will feel what your doing is ok. In the end you have your father and that is all that matters. If the doctors you currently have don’t work with you to support your fathers care take to family advocates department and work on getting better doctors it’s time for a change . Every day counts . But nothing can replace the time you share. Some pet may look at it as work or a lifestyle change and that is their issue. They need to look at the outcome and weigh if it’s worth it . Family is always worth . My grandma always said “ every situations have its own outcome “ and I believe if you make a effort the out come will change. Ooorah!!.keep up the good work

Amen!!!

That is extraordinary and encouraging. My mother had a respiratory attack in her car followed by cardiac arrest for about 5 to 7 minutes until a police officer began CPR. When the medics arrived another 5 minutes later, the PO handed her off to paramedics who continued and eventually successfully resuscitated her after after another 15-20 minutes. By the time she was out of ER and in ICU, I was briefed that she could have been out anywhere from 10-40 minutes. I was devastated.

Luckily, all her brain stem functions remained intact, but after the hypo protocol was completed. she didn't show signs of improvement or response. She was on a ventilator for a week and doctors initially said she'd probably be on it for a while or forever. They kept pushing me to let her go, but she is a very feisty lady and my gut instinct tells me she is still in there somewhere. Besides, she is not a dog and does not need to be put down. I understand why a hospital's directive is to keep it simple and clean, but for those who are not legally brain dead, there is still a small sliver of hope for some recovery. The neuro said the initial EEG was "inconclusive". So since we refuse to put her down, they referred us to a specialty unit a few miles away.

By the end of the first week, she was admitted to specialty care to at least attempt weaning her off the vent. By the end of Week 3, the doctors saw a marked improvement in her breathing and though they expected a longer recovery, she was taken of the vent for good. She has a lot of secretions but for the most part, she can breath all night without much intervention.

The amantadine didn't prove much helpful though it may help against Influenza A (I think). I was reading about Ambien (Zolpidem) and its paradoxical effects on patients with severe anoxia/hypoxia, Parkinsonism, TBI, and overall profound disorders of consciousness and asked the doctors and nurses in charge what they thought. They had never heard of the experimental trials.

So I convinced them to speak with neuro to approve it for two days (10 mg dose). The first does had no effect. The second dose two days later resulted in response to pain stimuli (previously, she was not responding to any toe/finger pinches or tickling, sternum rub, etc.) and her eyes did not blink (closed or open). She still has posturing, but when her feet and toes are pinched or tickled, her entire leg coils back and toes curl. The doctors did not believe me, so I recorded it and showed them. Two days passed and I asked them to start a recurring dosage of 10mg over five days. Hopefully, this will elicit another response but I am realistic and am not expecting much improvement, though I am still hopeful.

Today the doctors approved the course and will start the third dose tomorrow. I am so excited! I saw for the first time my mother shed tears but not sure if it's just a reaction to her eyes being closed for three weeks or the gel they put in her eyes to keep them from drying out.

I got wireless Bluetooth headphones and play her favorite music and TV shows during the day while I am out running errands or working and take them off when I return to see and talk to her each day. Nurses say though her condition is profound, they have seen crazier things in their career and there is always hope. The doctors are a bit more fatalistic, but they are trained to view patients as objects. I am not giving up on this woman as she is my role model and has always been there for me even when I would push her away. I am scared about the future and the cost, time and effort that will go into caring for her until she passes naturally, but I promised her I will do everything I can to help her as she has brought me into this world and raised me all on her own.

Don't give up on those you love (unless they specifically asked you to let them go). My mother is breathing on her own and while she may not be conscious, there is also the small possibility that she is deep inside.

I hope my next update will be one of improvement. And I hope you all fight for your loved one with patience, endurance and care! Keep your head up!

Any update?

Any update

Any updates?

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.

Hi, sorry to hear about your dad, what was the outcome please? My step dad is in itu following a bleed, and it's not looking very good at the moment, he's had surgery but lots of complications, he's breathing slightly with help of tracheostomy, did your dad recover any more?

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.

A very lovely response.

God Bless.

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?

This is an update for this post. My husband was 40 days in coma. While in coma his lungs collapse, had pneumonia, kidney and liver failure. I decide to took him out of life support in day 15. I decided to lessen medical advice, his prognosis wasn't favorable. I said my goodbye to my husband and told him that it was on him to continue or let go, wherever he decide. His body fight back and recover slowly. 2 weeks step down care. and later transferred to a TBI rehabilitation hospital. Unfortunately I was obligated to place my husband into a SNF (skilled nurse facility) 3 days later my husband told me that he did not feel safe. Having a loved one at home after a brain injury is very stressful. Fortunately I was told to claim my husband benefits at the VA. It was the best advice I had during this tragedy. The physical and occupational therapy he received helped my husband to gain confidence, to walk again. Two years after my husband stroke he is able to walk with a cane, go up and down the stairs, he have difficulty with balance. My husband left arm is paralyzed, his vision is ok sometimes he needs to be reminded to scan to the left, his speech is different it have a monotone voice. He have hard time connecting emotionally, also he can not multitask anymore. He is now receiving SSD. He had 75% loss of his right bairn. I'm grateful to have him with us. He had share his memories and experiences while in coma. Thank you for reading our experience and wish everyone that is going through the same situation good luck.

Waiting for eegs after diagnosis of epilepsy causing two cardiac arrests any idea on how long waiting to get reports but hopefully will get eegs

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.

Hello your comment has touched my heart so
Much my dad is in icu at the moment

Hi sir, my dad is going through the same thing with the exact same eye movements and all of that. I was wondering how your wife is doing to this day?

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.)

What a great outcome, thank you for sharing, prayers for continued success on your journey. God Bless you

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. 

My cousin is 42 and had this story sounds exactly like hers. She opened her eyes a few days ago after 3 weeks she does have a response to pain and has been spending a few hours a day off the ventilator but doctors aren't sure she'll progress anymore. We're praying for a miracle. Praying for your family too

My brother is experiencing the exact same scenario as your sister did. We are on day 6. Not sure where this will go or end. I hope your sister survived and is doing well.

Thank you for sharing your experience. It has been so helpful to deal with what my family is going through. It is something similar to what your sister went through.. My sister has been in coma for about 32 days. Doctors were careless and she went into cardiac arrest from bleeding during a tonsillectomy. This is so hard to bear. She has been off the ventilator and oxygen mask for about two weeks now. Her vitals are perfect, she opens her eyes, coughs, yawns, sleep and wakes (which supposedly is a vegetative state). Please, can you share how your sister is and when she regained consciousness? I pray God helps us all -- those in recovery and those whose encounters are recent

Thank you for sharing your experience. It has been so helpful to deal with what my family is going through. It is similar to what your sister went through.

My sister has been in coma for about 32 days. Doctors were careless and she went into cardiac arrest from bleeding during a tonsillectomy. This is so hard to bear. She has been off the ventilator and oxygen mask for about two weeks now. Her vitals are perfect, she opens her eyes, coughs, yawns, sleep and wakes (which supposedly is a vegetative state).

Please, can you share how your sister is and when she regained consciousness?

I pray God helps us all -- those in recovery and those whose encounters are recent.

Can I ask for an update on how she is? My dad is going through this right now and I am trying everything to find answer or help in anyway possible. Thank you

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.

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