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.

MAHENDRA RATHI replied on

BLESS YOUR HEART. FKRVTAKING CARE BASICALLY . ALL DOC.. PROGNOSIS. ENDS LIKE THAT I DONT KNOW WHY?? DOCTORS HARDLY SHOW ANY COMPASSION THESE DAYS..AT TIMES YOU ARE BETTER DOCTOR THAN THEM

Anonymous replied on

My son is 37 in same shape responds to pain hears us and blinks his eyes when we ask him if he knows us he's posturing a lot and they took away his therapy I'm not giving up either so hang in there

Anonymous replied on

Hi
My sister is exactly the same

Eric Posthumus replied on

Two and a half years ago, my dear friend (since 6th grade) and college roommate Nicky Quayles was a 2.5 on the Glasgow Scale following a heart attack and/or aspiration pneumonia in his sleep. He was in a coma for multiple weeks, then a nursing home for several months while we waited to see how his brain would respond. He still has some hearing trouble in his left ear, but that is the only noticable difference, at least to us. I couldn't be more grateful to tell you he is about 95% the same person he was before the ABI.

We didn't find much hope online for people with his prognosis...It happened in July 2017, and by August we were realistically expecting an indefinite vegetative state pinning all of our longshot hopes on stem cell advancements/legislation. The overwhelming love and support he received from his friends and family transcended the bleakness of modern medicine and the biophysical world, then Nickys brain did the rest...with plenty of help from a bunch of great (and a few god awful) medical professionals. Godpeed, and much love!

Tamara replied on

My mother suffered a stroke almost 2 yrs ago and was responsive when brought into the ER so much so that we left the hospital for a little bit to go home. Just as we reached home, we received a call from the hospital that she was om distress due to the accumulation of blood in her head. Since her health was too precarious to perform surgery they gave her medication which reduced the clots. When we got to the hospital and she was put in ICU and intubated. My mother was still aware at this point and able to follow commands. She was intubated for 7 days and they said that they were going remove it because she couldnt be with it for too long. When they tried to take it out it caused her distress so they said that at this point that a trach was needed. They explained that it didnt need to be a permanent thing but that it would help her breath and that if she did well further down the line they would be able to do away with the trach. Well this was the beginning of out nightmare. We let them perform the tracheostomy (sp?) and all went well so much so that when she came out of sedation she was fighting with the nurses but as time went on I noticed that she was sleeping alot. I mentioned this to the doctors and they said it was the effect of the anesthesia. I still felt uncomfortable so I mentioned it to the nurse who also thought that it was strange. My gut feelings were right, she suffered a stroke after surgery which the doctors were not able to catch. They said that she was in a coma and that we had to make life changing decisions. They basically were saying that she was vegetable and that there was nothing to be gained from continuing her care. Although we dont always get along as a whole my siblings and I all came to the agreement that we would not accept the doctors diagnosis. We tried to change her to a better hospital but her situation was so precarious no hospital was willing to take her. We were forced to give her a feeding tube and transfer her to a (SNF). She is currently at a really good facility that has amazing staff. While she still has a trach and is unable to care for herself, she is able to watch tv, move one of her legs when I'm massaging it and look at people. They have tried to wean her off the vent but she gets to a certain point where she goes into distress and is unable to tolerate it so they end up putting her back on 100% assistance. We have explained to the doctors that we have to find a happy medium where she is able to tolerate breathing on her own in increments. Some of these doctors are all or nothing, its either black or white for them no in between. The doctors also say that she is unresponsive when they visit her, meanwhile they come in for like 5 mins and make a prognosis. When guests have visited my mom she squeezes their hand or cries. I want to know if I'm being unrealistic. I know that she will never be the same but I refuse to deprive my mother of care because they have given up on her. I still have faith and belief in miracles. Has someone been in a similar situation with words of advice.

Jade replied on

Hopefully by this time all is very well with your mother's recovery. My aunt had suffered from an aneurysm then a similar fashion as your mother. After the surgery, she was coherent and talkative then the strokes occurred and now she sleeps. Her eyes open and close and also had a trichotomy for her to breath due to the fluid build up. We are scared as to her situation, she suffered 5 strokes and still at times open her eyes. Due to the covid scenario, we can't even visit to speak with her. It's heartbreaking because we can't see her. Your story was uplifting to her how your family found the care that was needed. Is there any advice you can give from your personal experience?

Franchon Dickerson replied on

Hello Tamara how is she doing now? my prayers are with her

MAHENDRA RATHI replied on

my mom is in exact same situation.i went against dr. prognosis..and she is conscious and. was nodding head when asked question..its terrible that A LOVED ONE MEMBER PLAY A BETTER.. ROLE THAN EVER A DR.WOULD.UNFORTUNATELY..WE PAY DRS TO DO THEIR JOB AS COMPASSIONATE AND CARING. SOME OF THESE DRS. NEED LEAVE THEIR PROFESSION. THAY GOT NO PLACE. IN HEALTH..

Tracy replied on

I second that

Franchon Dickerson replied on

Hello how is your mom doing now prayers for her you can email me

VP replied on

I'm in the same position. God bless you and your family.

armen replied on

Hello Tamara!
I am totally agree and understand you ,I am in the same situation with mom and never lose my Faith or Hope and I believe in Miracles .
Only Jesus Cristos is a Saver and Trust Him as I do too.
Be Strong and Believe!
Your Mom will be in My Prayers too!

Anonymous replied on

My mother suffered a massive stroke in Feb. She had a living will and my sister and I agreed that to see her bedridden, unable to respond in any way, and not being able to eat normally was going to be pure torture for her. We stayed with her for 5 days until she passed away. We are heartbroken with losing her, but are comforted in knowing we didn't put her through pure torture just so she could be alive with us.

Anonymous replied on

I had a very similar situation and had to do the same for my wife of 22 years she passed at 45 years of age

Theresa replied on

I am so sorry that is so sad I had a similar situation with my mom it’s terrible to see family that you love and cherish go through this covenant pain and then there’s the pain that you go through I’m not suffering the same type of situation with my husband who had a stroke and is not in a conscious state I pray for everybody

HJ replied on

I totally agree with you. Why put your loved one in this position. Firstly would you like to be in it? and secondly try put them before your emotional needs. my partner is in a vegetative state 5 years now! no change and his catholic mother has gone deranged. Everyone wants him to pass. I believe in god and miracles and i know if we pull all machines that is when he can do his work. I am currently in court trying to free his life. Its such a shit house situation and I feel for all people involved.

Does anyone have any input on how these patients affect the psychology in children, especially in small children. So the young child of the vegetative parent. Thank. you

Anonymous replied on

This post was 2019 please may I know how your brother is doing now. I’m in a similar situation

Liz replied on

My brother age 28 had a heart attack at work. We believe he was unresponsive for about 18 minutes. His coworkers found him and did CPR until the ambulance arrived which was 4 minutes later. Unfortunately due to us not knowing how long exactly he was unresponsive there is brain damage due to lack of oxygen to the brain. This happened about 7 weeks ago now. The doctors say he will be in a vegetative state. There is body movement and eyes opening but non on command. We do believe he hears us because we have asked him to move his arm or squeeze my hand and to us we believe he is listening because he has done it when we ask. Unfortunately he has not woken up but we continue to do exercises on him and talk to him. He also has a fever that comes and goes due to brain damage doctors say and the only way to control the fever is with ice packs or the cooling blanket. If any one knows of some one that has come out of this I would greatly appreciate the good news. We know this is going to be a long process but our family is hopeful that a miracle will happen.

Jenna replied on

I am going through this right now with my Dad. Do you mind me asking if he pulled through?

Kevin replied on

My Father(84) had brain stroke and took him to ER. In ER After giving TPA, he improved. Doctor at ER said they want to check the damage and try to see the artery. They flew him in helicopter (surprised that they did that for brain stork patient). My dad threw up as soon as he came out. Still they performed the operation and try to expand artery which resulted in Major stroke...When we saw him after 8 hours, he was all cold with breathing tube and not responding. Doctor told us that he is in veg state and will not recover. Basically don't let them do surgery on 84 year old if TPA has worked. Anyhow, i did not want to give up... After 36 hours, he moved his right leg and we got hope.. After 2 weeks in ICU, he had improved where he opened his eyes and moved his right side. He also able to adapt on PMV for speech for short duration. After that we moved him to nursing home... Here he started having vomiting and headaches. Vomiting was due to incorrect tube in stomach which resulted in air.. After fixing that, vomiting reduced but did not go away.. With very small feeding amount of 40ml/hr, he is opens his eyes for short time and shows headaches.. At this point, after 7 weeks, we are stuck.. He got worse compare to ICU.. Not sure if we take him back to ICU to treat his headache or keep him in nursing home. Nursing home staff is good with trac patients but don't have neuro experts... As time passes, he will miss out on PT/OT due to not having energy and drowsiness whole day. Please let me know if you have come across such situation and any solution had worked for you.. Thanks.

Melissa Kee replied on

Keep hope alive. My father went into cardiac arrest following a surgery. 1/28/19. He went through that phase. He is still recovering and fights daily. Keep a journal and don't get discouraged. Don't allow doubters to get you down. Always fight for him. I spend a lot of time defending to others what I have witnessed my father do. I will keep you all in my prayers. Hang in there. It's hard when no one has the answers.

Chris replied on

My best friend was in a motor accident.an its been 9 days.he is on life support.on the 4th day he went from zero brain activity to level 1 rem sleep.but has made zero improvments since then.the family is taking him off life support an making this choice as the dr.s said they thing he will be all the way vegi state or brain dead if he stays on the support.is this to early to find out this soon.should there be more time.so he is in a coma an doesnt open his eyes..thus is the 9th day...please any advise.

Carol replied on

I am so sorry Chris. Currently I’m reading up on these similar problems which I am going through. For me, I’m the mother of my daughter, 46..so similar to your situation.
In my honest opinion, I won’t give up for quite a long time., can’t not when tears run down my daughters face. I truly believe there is always hope, but every family makes their own choices..

Collette replied on

I want to say don't give up my mom fell hit her head had a massive brain bleed . The doctors opened her head & at somepoint suffered several strokes! The doctors told me to let her go. Evevery night from 12 @ night till 7 in the morning I was told let her go. They did an ekg that showed she had active brain function. But another doctor tried to say she was Brian dead! I said are you neurologist? Because I was there when one did the test. Then they said because she didn't open her eyes fast enough she's will be nothing but a vegetable or comatose. Well she did wake up. Her left side was not working.it was everything this forum describes. Up to last year she want able to read two days before Easter she started reading of the TV. She said it comes & goes. Wasnt able at all since her fall jan 4/19. I see s time goes on some things are getting better. Her newest she hasn't use her left arm since the accident. I worked many hours I got her hand flexing & finger tapping. But not her moving the Arm 1 1/2 years later shes moving her arm slowly but its moving. & now wiggling her toes. My question do I hold out hope since the arm now moves her leg might too.? My mom is 76. She will never be totally as she was but I'm glad I fought for her as this was her wish to be saved.

Anonymous replied on

Don't give up!

Anonymous replied on

Waiting for eegs re epilepsy confirmed causing two cardiac arrests anyone know how long it takes to get an eeg

Patty Smith Walkup replied on

My daughter just had an EEG two days ago. It is pretty non invasive and doesn’t take long.

Usha srivastav replied on

Hi can any one day me how pain full it is with more than half brain dead she speaks normal look normal but in the bed she can't move her one side leg and hand she is in bed for past 7years and now doctor says her half brain is dead and she is alive with her half brain she all ways keep asking me will I die with lot of pain how long will I live like this what is th really happening in me will my next half brain will die in once or slowly I don't have answer can anyone answer this Question pls

Jessica M. replied on

One week ago today (June 5th) my 67 year old mother suffered a choking accident and cardiac arrest and is currently in a coma (today is June 13th). My father did everything he could to help her in the moment. She was not breathing and her heart had stopped when the ambulance arrived. They were able to start her heart again on-route to the ER. She had been placed on a respirator immediately and had been heavily sedated. On Saturday (6/8) they started removing sedation and since she has not been given any. All of the neurological response tests performed showed no signs of voluntary reaction / cognitive brain function. The respirator is really doing most of the breathing for her but there are moments when she over breathes. She has had a fever since Saturday that hovers around 102, and have been told this is not from an infection but from brain damage. Her EEG came back with no brain activity. We are holding on to hope but have been told that she will no recover from this. We are trying to encourage the Dr's to give her alternative supplements and high dose vitamins to see if anything will help. They are refusing most, for FDA and liability reasons. We have also been told that she can only be on a respirator for about 2 weeks, which leaves us with one more week to decide if we want to have a tracheostomy & feeding tube put in instead. Then, we have to make additional decision about her care, and also how to afford everything. None of my family members want her to suffer or live a terrible quality of life. Has anyone experienced a similar situation, with a favorable outcome and partial/full recovery? I should also note that she was transferred from the ER to a local hospital that DID NOT have a neurologist on site! After questioning them to perform the EEG, they told us that there has been no neurologist there for months and she would have to be transferred to another hospital for that test. (They then moved her by helicopter to another ICU.) How can a patient with brain trauma be transferred to a facility incapable of appropriate care?!?

Anonymous replied on

My Mother is going through the exact same thing. Our family is so crushed. I’m so sorry. Please let me know how your mom is doing now.

Omar moon replied on

Currently going through this now it’s been 31 days please reach out to me I want to know how is your mom doing omarmoon@me.com

selena replied on

we are going through something similar but my in law was 8 min without oxygen he is currently vegetative stage. i feel like the doctors pressure u in making a quick decision

Andree Stell replied on

We must have been at the same Hospital, because the same thing happened with my Husband! He did end up with a traech and feeding tube. He was moved 4x through our orrdeal.

Maura replied on

What was the result? I am in the same situation with my bff sounfs likd you wrote her story..

Belen replied on

Hi, my father went through the same thing and is currently in the hospital and it’s been 2 weeks since his heart attack. The drs give us no hope of recovery and say that he will be in a vegetative state. His vitals are good aside from currently fighting a ventilator induced pneumonia. Luckily he is now breathing on his own but is not responding to anything like commands. He randomly opens his eyes and mouth, but the Docs say it’s involuntary movements. Can you tell me how your mother is doing now? Thank you

Joanne replied on

Hello, reading your story, going through the exact same thing now. Any advice and how did your love one do.

Smith replied on

Hey what was the outcome of this my husband been in the hospital for a week. He not responded to anything but he did twitching his arm

Christina replied on

I am sorry for what you and your family are going through, I am going through exactly what you described with my 7 month old son. I have no answers as I am here looking for them as well. But I know the pain. And ask if you have any updates thank you

Crystal replied on

Hi I’m sorry about your mother & wondering how’s she’s doing now? I know it’s an older post but going through a similar situation with my 69 year old father. Any advice would be very helpful. Thanks

KShe replied on

My sincerest empathy is with you. My 62yo father was rushed to the hospital on veterans day 11/11/2019 having severe chest pains. they rushed him to the cath lab and placed 2 stints and put in an emeplla device. He was as stable as he could be when we left him at the hospitable. at approximately 340 am that next morning, he went asystole and was without adequate O2 to the brain for almost 20 mins when they were able to get him stable again. They kept him in a medically induced coma for a few days until they took the empella device out. after they they tried to wein him from the sedation meds and wake him but was unsuccessful each time. his LVEF was 10% then increased to 20 and eventually got upwards to 30% and i remained hopeful that my dad would pull through. however, his kidneys started failing and he began having issues with the O2 stats dropping. One of the Drs had mentioned a CT and i asked why they hadnt done one to see what type of brain damage we may be facing and i was told it was too soon. I stayed with him every night for 11 days until i couldnt stay awake and would then drive an hour home. On Friday 11/22/2019 i came in that morning and was finally told they would be doing a CT and EEG. It wwas about time because my main concern with wanting one done was his brain function; i knew he was either being kept drugged or he had suffered some brain damage because his pupils were always pinpoint and he maintained a vegetative state even after they brought him out of the medically induced coma. My fears were realized when they advised us that he had suffered a severe stroke at some time and if he were to come out of this, he would be bedridden and full supportive care, to include the ventilator.
My grandma and myself made the horrific decision to set him free and stop the machines.... My father would not want to live that. We buried him the day before thanksgiving.

Whatever decision you make, I pray you keep your loved one in mind and what they would want. My heart goes out to you while you contemplate what you have to do.

Felicia W. replied on

My thoughts and prayers are with you doing this difficult time. Keep praying for your mom. My 26 yr. old cousin had a stroke and heart attack on January 4. 2019 and was in a coma for eight days. She lost oxygen to her brain for seven minutes and had multiple seizures. Soon after, she progressed into an unconscious wakefulness state for three months. As of today, June 20th she is now slowly coming around. I believe she's in the minimally conscious state because she is starting to mumble, say a few words and recognize family members. While she is not completely out of the woods, she is making progress. Her mother never gave up hope even when the doctors told her there was nothing that they could do for her. She was transferred to several different long-term nursing facilities and we were told that she would be severely disabled if she ever come out of MCS. The nursing facility has transported her to the hospital for blood transfusion, but they are planning to send her to rehabilitation. On this miraculous account, I would say anything is possible. Don't give up things can turn around.

Rana replied on

on 17th june 2018 , my brother is 20 years old, had an electric shock that made his heart stopped for almost 20 mints and because of this his minimally conscious state now for almost 10 monts due to lack of oxygen was deprived that time his heart stopped. we can see improvements for sure he breaths now by his own and he blinks his eyes randomly and move his hand and leg by his own but still no following the commands :(

Diane Simpson replied on

Don't give up on him he's problem over medicated can't respond at his age I would do what ever it takes to keep him alive doctors are wrong alot about brain activity my sister had a massive stroke at 54 they said she would die in 6months at the most we proved them wrong the human body is amazing it heals it self life finds a way recently she went to hospital in alot of pain it was a kidney stone they where going to operate intubed her sedated her and 4days later was brain dead and died I'm still reading medical records also was not allowed to see her to say goodbye I'm looking to get a lawyer Iwe work 5yrs working out eating healthy foods got her off her meds clean bill of health for at least 3yrs and bam died from kidney stone complications breathing tube she just died July 11 2022 Spokane wa

Anonymous replied on

On November 20, 2018, my fiance age 39, had a car accident and had to be airlifted to the University of Mississippi Medical due to a brain injury and a broken hip in three places. He had surgery on November 26, 2018, to repair his hip and on November 27, 2018, physical therapy came in to do therapy on him and when he got up out the bed he became dizzy and nauseated, so they laid him back down in the bed. He kept complaining of being nauseated and later begin to vomit. He got up to go to the bathroom and fell on the floor, about 2 to 3 minutes later he began to have a seizure and stopped breathing for quite a period of time, which caused him to have an anoxic brain injury because of the lack of oxygen to his brain. On January 15, 2019, I noticed that when I moved around in the room, he would follow my movement with his eyes. When I asked him did he understand what me and what I was saying to blink twice he will. He does not follow commands like move your hands, legs, or arms, but he will move them on his own at times. Do you think that he will have a full recovery after this anoxic brain injury or does it depend on him?

Dina replied on

Yes, don't give up on him. If he is responding to you like that, continue to spend as much time as you can with him. My boyfriend suffered from an anoxic-hypoxic brain injury a year ago, he was in a coma & doctors tried getting me to let him go after a week, then continued to tell me they didn't think he would wake up and even if he did, wouldn't have a functional life. Go with your gut, you know him better than any doctor ever will. They don't spend the time with a single patient like family does so they don't see what you see when he responds to you. I know this from my own personal experience. My boyfriend is still recovering but has come SO SO far. We are working on learning how to walk again. He's completely alert, remembers everyone & memories. There's still recovery but don't ever give up on someone you love no matter what doctors say. I hope & pray your fiance is doing better.

Anonymous replied on

It's my 53 year old son they told us he wouldn't make it here it is 3 + years you tell him to do some things and he does with lip pulled down ginger on his face plus more told him he shakes his head yes and no has moved his leg and (lr) arm which was suppose to be paralyzed but of course pt sucks suppose to do intense therapy after 8 months oh wow THERAPY then 6 months later sticks oút his tongue pt sucks!!! He had 9 strokes and pertinent vegetated state after studying fór over 3 years I'm the one who diagnosed my son not doctors

Courtney replied on

I am going through the same thing right now. My husband had a anoxic/hypoxia brain injury doctors arnt giving me much hope. I’m not giving up on him. Could you please get in touch with me?

Kristin replied on

My dad 59, was found face down a pool of his own blood, he was taken to level 1 trauma, had a tracheotomy, feeding tube & was in a coma for almost 2 weeks, he pulled through from that almost 2 yrs ago, his speech was a little messed up but recovered and was pretty much mentally back to normal! He also had liver failure. Then last month they overdosed him he had seizures, they told me he wouldn’t last the weekend. Well guess what, 2 days later he was back up and talking like nothing happened. So he beat a tbi and hypoxia etc & came out of coma 2 times!! However he is now on life support for almost a month now, he’s now in end stage liver disease, he opened his eyes, and I know he can hear me but he’s just too weak for a liver transplant, but most ppl are not in that situation. So please don’t give up hope, do so much of your own research!!!! Any questions please contact me on Instagram Kristins_thirdeye

Anonymous replied on

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

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