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Anoxic brain injury; what's normal?

Axykatt
  • By Axykatt
  • Posted November 7, 2008 at 1:10 pm · 24 replies
  • Shared with the public
1 Recommendation

After a SCA my 25 y/o husband is now being hospitalized with ABI. The doctors and hospital staff are very reluctant to tell us what is a sign of recovery, and what is simply reflexes or unconscious movement. He has been at a 9 on the Glasgow Coma Scale for 3 1/2 weeks (since about 48 hours after the event) and while I think that I see some improvement I really can't tell the difference between a reflex and a reaction. I and two of his nurses are reasonably certain we have seen him track people with his eyes for very short periods (but more frequently each day it seems) and when he is more "alert" he will sometimes turn his head towards the sound of my voice.

For the first 3 weeks this was the only "response" that we got, but yesterday when I was with him I touched his left foot and he pulled it away. It was NOT something that I imagined or made more significant than it was. I was able to reproduce it for the nurse on duty, and every time I touched his left foot he would quickly jerk it well out of range of my hand. The nurse put it in his chart, but she refused to give an opinion of whether it was a sign of consciousness or just a reflex.

So what is "normal" to recovery? How are some ways that I can tell the difference between purposeful response and just reflex? Hope is necessary to our family's survival, but at the same time, false hope just prevents us from dealing with the realities of the situation. Has anyone here aver recovered from, or had a loved one recover from, this severe an ABI? What were the stages? What should I look for? Thanks so much for your time.

-Axy

Explore topics in this journal entry and replies:

Occupational therapy Pneumonia Provigil Ambien Zoloft Dehydration Arrhythmia Anoxic brain injury Stroke Fever Seizures Physical therapy Aphasia Cardiomyopathy Pain Heart attack Ritalin Speech therapy

24 replies

Leenie

HI Axy, I'm so sorry to here about you husband,I suffered SCA 1 1/2 years ago,and also was in a coma for a week and and I have ABI all so know as a TBI. I think that they don't want to say anything because the just don't know. Even now that I'm doing so much better,medical people look at me to give them the answers. I just want to let you know that there is always hope. I'm a true miracle, so I'm told. I'll be praying for you both. I'm here if you think I can help. Leenie

Crystalsky

There is no "normal" when it comes to brain injury. Our brains are so complex that everyone is different. This type of injury makes the person very fatigued. Ask the doctors to give him Provigil. It will keep him awake longer so you can see what he is capable of. Some doctors prefer other drugs or a combination of several, but this one worked well for my husband.

He was given 100mg at first, then it was increased to 200mg. Although it did keep him awake much longer, the progress we saw was minimal, with no following of commands. He is now being weaned from it, but being able to see what he was capable of was a big help in deciding if he would ever recover.

Hoping for the best of all possible outcomes for you and your husband!

Crystalsky

To answer your last question, direct and continuous response to commands are what you should be looking for. He'll need to understand and respond appropriately in order to be able to re-learn and recover. Keep a journal of his progress, what you see and feel, and what the doctors are doing. It will give you a better idea as to how long you should hold on to your hope. There is a time when it should be let go, but you have not reached there yet...

Ivy

Hi Axy,

First let me say how sorry I am to hear about your husband but please do not give up hope. My 29 year old son suffered a cardiac arrest 4-1/2 years ago and we were told that he would never walk again or live a normal life. He was in a coma for about 3 weeks and had to relearn everything. He spent 3 months in a rehab facility and his girlfriend at the time lived with us when he was released and took care of him. He has just started to go back to work a couple of days a week for a few hours a day. Physically he is almost back to normal, although his walk and speech are different than before. His personality is also different, but that is not particularly a bad thing. We have met many people throughout his rehab who are at different stages of recovery and there is no set path or limit to rehab. Even after 4-1/2 years, my son is still improving. There are many different things that the doctors will try to help your husband - every person is different and reacts differently to specific medication. It's a long road though so be patient and keep the faith.

Axykatt

Thank you so much, all of you. I spent the weekend with my husband (I've had to go back to work full-time so I don't see as much of him during the week) and he seemed to have made some small improvements. He has almost completely stopped posturing in response to stimulus, and he's tracking a lot more noticeably then he was last week. From what I've read these are both good signs. Ivy, your story has really given me a lot of hope. All I ever hear from the doctors is statistics, but since the numbers are just based on how MANY people have recovered, and not WHY they did I don't understand how they can place so much importance on them. If all the patients that recovered had something in common that my husband shares, wouldn't that change his chances at recovery, after all? Since we don't know why some people recover and some don't statistics really are just meaningless. To hear from someone with such a similar story really gives me hope. :)

One thing, though. The reason that I am reluctant to put too much faith in the verbal diagnostic tests is that Victor had a stroke on the 26th of August that damaged the speech center of his brain. This was actually how we found out that he had cardiomyopathy, because this isn't something doctors normally check healthy 25 year old men for. His recovery from the stroke was nothing short of miraculous, leaving only a slight expressive aphasia, but if there was already damage there, who knows how much speech he can currently understand? I know that the neurologist always does his visual tests without putting Victor's glasses on (he is legally blind without them) so I wonder how much he is taking my husband's previous injury into account when making his prognosis.

Debra71508

First - I am so sorry to hear about this and, of course, my heart goes out to you. Please remember to also take care of yourself. It is important to his recovery that you remain healthy in every possible way. This means sleeping, eating and even - YES - time laughing. You will be no good to him or anyone if you turn into a dry shell.

Second - statistics are not really "meaningless" they are just not terribly useful when you look at an individual case. They certinaly can't predict the future, but you know that. The thing that such statistics do is provide some idea of the great unknown. You know from the stats you are between a rock and a very, very hard place.

I have in mind that Prayer about asking for the courage to change what we can, the grace to accept what we can't, and the wisdom to know the difference. Knowing the odds (those darn statisitcs) can help you - as time goes by and as events warrant - to have the wisdom to know the difference between what you can change and what you can't. And wisdom is all you need (and what this part of your life will give you in all liklihood) as no one could doubt your courage.

Hang on.

Ivy

Hi Axy,

I think the doctors tell people the worst scenario so that they are not held accountable if it does happen. If the patients improve, people are are relieved and happy so it doesn't matter what the doctors have said previously. Also, your husband is young and that plays a very important role in his recovery. I'm glad to see there are some improvements, albeit minor, but that is progress. Prayer does help and you and your family will be in mine.

Ivy

craita

Hi Axy,

My name is Mariana and I know exactly what you are going through now. I have a similar situation with my father, he is still young, 63 years old, who had a cardiac arrest followed by anoxic brain injury. I have been through same steps.
Let me tell you a little bet about my story: my father had a cardiac arrest on 10/12/2007 followed by anoxic brain injury. After two- three weeks in a coma he started to wake up slowly regaining his senses like: smell, taste, hear, moving his fingers and tows. Even after 13 months I cannot find a way to communicate with him, but I keep seeing slow improvements. One of the nurses from the nursing home asked me if I still have hope and I replied to her that this is the thing that will dye last. I used a material wrote by Dr. Dimancescu who kind of teaches you how to stimulate the brain, try to go on comarecovery.com
I know that people’s opinions are different and maybe my father will never get better than this but what can I do. I am in a continue battle with God over this situation especially when I go there and see him like that. But I still hope and I read so many incredible stories and I kept asking my self why my father cannot be one of those miraculous recoveries. Especially in cases like ours when nobody can predict 100% about the brain power. I do not thing the recovery depends on what kind of people are involved but more on what God has reserved for each one of them.
I love my father to death, I am with him every day, and I feel almost the same pain that I felt 13 months ago when this tragedy occurred. I think this is one of the hardest situations that any human being can go through in his life. Sometimes I screamed to God that he left us all alone because otherwise how he can watch us going through something like this.
In my opinion only people who are going through the same situation can understand what we feel and how desperate we are to find a way to bring the loved one back.
What scares me the most is this incertitude about my father situation? I asked myself so many times what if he is here and not being able to control his body, how terrifying can that be?
I did a lot of research and I still have hope for my father, he is my angel. I know that my life will never be the same, I suffered in one year for an eternity and I do not even know what the next steps that God prepared for me are.
My priest tolled me that it seems to be God and I not my father. I do not know how to let go even if I know that I have to.
Do not give up, at least not so soon.
If you want to know more of the things that I am doing daily with my father or just to talk, let me know. My email address is craita.muresan@yahoo.com and my phone number is 847-529-1573.
I wish you the best and I know that God will give you the strength to go further. Sometimes I feel like I am loosing my mind but I know one thing for sure: I WILL NOT QUIT ON HIM, unless God will make the final decision.

Axykatt

Hi guys,

I posted this in a journal, but i had forgotten to post in this thread. My husband passed away on December 7, 2008. He got pneumonia and his heart was even more strained from the infection. It stopped and they were unable to resuscitate. Thank you all for your kind words and support. I wish you all the best for your loved ones recovery.

Best wishes,

Axy

Marmie

I have read through most of the different stories here and like you all, I have a situation that is almost unimaginable. My 49-year old husband, and father of our eight year old son, collapsed on August 30, 2008 while out running and suffered cardiac arrest. They don't know why he collapsed -- it was an arrhythmia caused by some still unknown thing, maybe dehydration, maybe something else -- and his collapse was not witnessed so I don't know how long he was without oxygen. A family came upon him on the trail, they called 911, and when the EMTs arrived four minutes later, he was clinically dead but they were able to revive him.

It has been four and a half months. He was in a coma for the first few days, showed a lot of posturing, his CT scan initially showed cellular swelling, but a second one on day two showed no swelling. He had an EEG which was not normal. He began opening his eyes and responding to some stimulation in the first week, to include his pupils dialating in reaction to light. He has had an MRI and other imaging scans --which show that his brain volume has shrunk, consistent with loss of oxygen to the brain and the death of some of his brain cells. His brain stem is fine, it's the cortical region that has been most affected and in a diffuse way.

He was in a critical care unit for the first five weeks, first on a ventilator, then he had a tracheostomy and a peg procedure. He has been medically stable since almost the day this happened - with certain issues off an on like UTIs or emesis. The one major physical issue (aside from the brain injury) is that he has a great deal of tonus -- tightening of the muscles in his arms and legs, neck -- basically everywhere, which has been growing worse as time goes on. Though it is still possible to stretch his arms some, they no longer will extend all the way. He has special splints for his elbows and for his hands to try to keep them open and to keep the joints from fusing. His ankles are so tight that when standing, he is sometimes on his tiptoes because he cannot relax. The tonus subsides a great deal when he is sleeping.

In mid October, I was able to get him accepted into a nearly one of a kind "emerging consciousness" program for in Richmond, Virginia through the Veterans Administration that is part of a broader polytrauma unit. The program uses all different kinds of stimulation to try to wake up his brain. Every day he has had kinetic therapy -- which in his passive state means stretching his major muscle groups (instead of weight training which they would do if he could participate actively); physical therapy -- which has involved use of recumbant bicycle, a walking simulator, a standing frame, all of which he participates in passively; occupational therapy to stretch his arms and hands and assess his ability to follow commands; and speech therapy, which in his state has involved sensory stimulation (reaction to sound, light, smell, taste) as well as assessing command following ability. He also has been put on a regimen of brain awakening medication (that stimulates the dopamine receptors), starting with amantadine, then layering bromacriptin (sp?) on top, and they will add ritalin soon. They tried ambien for a week at my request, given the recent news about its possible help in waking up those with brain injury. The ambien might have helped him be a little more focused, but it was messing with his sleep wake cycles and because it was not proving to have dramatic results, they discontinued it. They have also tried right median nerve stimulation (in his arm) which is supposed to also have an impact in waking up the brain. They tried Zoloft because it has effects on neuron activity, but discontinued that when he began throwing up every day. The medical team working with my husband consults with others in the region, and around the country, to understand his case and get advice on courses of treatment.

I have provided a digital voice recorder with recordings of me and my son reading stories, talking, singing, playing the piano, and just trying to provide something familiar. The nurses play it for my husband when I cannot be there. I have provided my husband's IPOD which has his playlist for familiar music stimulation. I have bought brain awakening CDs with music that is supposed to help reach the different brain waves and help stimulate response. I have done some looking into other possible treatments, like hyperbaric oxygen therapy, but that seems to be something that shows promise for the TBI population but not really the ABI population. I have looked into possible clinical trials to see if there are any places that are doing research that might help him. I haven't found anything.

After four months, he does not speak, he does track movement at times, he responds to some stimulation, but he remains "minimally conscious" according to the team's assessments. There are times when I think he is responding to a request to make a sound or look at me, but it is not a consistent response and it's hard to know if it is a response or a reflex. As others have noted, I worry that if he is aware at all of what is happening to him, he must be terrified and very unhappy. It's so very frustrating and I think the not knowing whether he will get better is the hardest part of this journey.

I feel like I am trying everything possible for my husband. I have tried to remain hopeful that the "emerging consciousness" program would produce good results for him; but so far it has not. Now they are talking to me about transitioning him to another facility because they feel that they have taken him as far as they can and I face the decision of placing him in skilled nursing. This is not a life my husband would want. But how to know whether it is time to consider what to do about that is ripping me apart inside. My husband was a vital, vibrant person and the best father in the world before this happened. I talk to God a lot and know there really is not a "why" for what happened, but still I try to make any sense of this situation and simply cannot. I see so many stories in this thread of people that have made it back, which is so wonderful. I know that miracles can happen and wonder like others that have writted why the miracle has not happened for my husband.

Good luck to everyone.
Marmie (my husband's nickname for me)

Crystalsky

Marmie, My husband and I were in a very similar situation until he recently passed away. There is a time to give up hope and let him go. I knew my husband didn't want to live that way in a nursing home. I put him in hospice instead. He lasted 5 days.
My heart aches for you because I know how difficult this decision is. No one should ever have to make it, but we're stuck with it and must do it for them. I still sometimes doubt if I did the right thing, when I can hardly bare being without him, but deep in my heart I know it was the only choice.
I wish peace and strength to everyone having to endure this tragedy.

Marmie

Crystalsky,
Thank you for your message. I am so sorry for your loss but please be comforted in your decision -- it was the loving thing to do for him. I have seen as well your discussion chain regarding the decision nobody wants to be in the position to have to make. This has been an absolute nightmare as you well know. I hold my husband's power of attorney and he has an advanced medical directive to guide me, but it is still so hard to know when it might be time to let him go and to understand how one decision might affect another. Did you learn through your efforts that placing him in a nursing home would have changed your ability to put him in hospice? I am trying to understand all the options and how the timeline might end up. Thanks Crystalsky.
-- Marmie

Crystalsky

You are lucky to have the POA. He and I didn't know we needed one for each other and I had to spend about $5000 to get guardianship instead. That was a nightmare in itself. He did have a medical directive which was very helpful. I must have read it 50 times during his hospital stay. I clung to it as the only communication I had left with him.

I don't know if putting him in a nursing home first would have changed my option to put him in hospice. I don't think so. I just knew I couldn't put him in one in the condition he was in. He was treated badly in the hospital and I didn't want him to die there. I knew a nursing home would have only been worse. He needed his dignity back and hospice is all about that. They helped me keep my sanity during his last days and treated him like the wonderful man he was.

I hope you find all your answers soon.

nanapoppop

To both Marmie and Crystalsky....I find sadly, that I am a very similar situation.....I would be interested in knowing what your husband's scores on the Glascow were....if you would share that info with me...we have been married almost 46 years, my husband was a large guy, but in great shape, exercised 3 times a week, same routine for almost 31 years, and yet, here we are...so shockingly sad, at times I feel like I can barely breath!
It has been almost a month now, his "downtime" was somewhere between I am estimating 12-20 minutes...they say 20 minutes, but I think it might have been less.. his Glascow remains a 1-1-1, he has no response to any stimuli at all, and, although I know in my soul he would not want to live like this...I cannot seem to come to terms with the situation facing us! It is simply too soon! At least, insurance wise I do have a little luxury of time. Thank God for faith, family and friends! Thanks for listening!

magnoila61

I am so sorry for your situation...but there is allways hope I was down for close to an hour have anoxic brain injury and am here to tell you. The best thing to do is research read and let me tell you although I had the very best medical care we did not understand my condition.
I think there is some cloak of silence with the Drs they didnt even tell me how serious the brain injury was .
They were so concerned about my heart icd going off etc etc. but there is much hope the brain is an amazing organ..go to amazon and they will give you books with hope and you can get on with helping your loved one.

good luck the road is interesting but i have learned much again my good thoughts are with you Hilary

WMD

When trying to compare anoxic injuries it is so important to KNOW one very important point. You need to know the ACTUAL TIME someone is TOTALLY WITHOUT oxygen and/or blood to the brain.

This is the time frame a person is not breathing, has no pulse or heartbeat and is NOT receiving any sort or CPR. The critical point is "not receiving any CPR" this is what is crucial.

If someone else is performing CPR, or using shock paddles, or giving atropine and epi injections, ... etc ... then the brain is NOT completely without blood and oxygen. ANY form of CPR is supplying blood and oxygen to the brain by a means other than the person can do for themselves! This is good!

When we look for similar situations and wonder how some people recover better than others, most likely it is because the "ACTUAL TIME" someone is TOTALLY WITHOUT blood and oxygen is very different.

A person can have a heart attack and receive CPR within a minute or two from the attack, receive the CPR for a 30 minute duration (can be longer or shorter) and make a full recovery because their brain was never TOTALLY without blood and oxygen because of the CPR. Now if that same person did NOT START to receive CPR for 4 or more minutes the outcome would most likely be very poor.

I hope this helps.

I am trying to find people who have recovered from 4 or more minutes without oxygen and blood to the brain and where CPR was not able to be started until after 4 or more minutes. Please contact me on my post: http://www.inspire.com/groups/brain-and-nervous-system/discussion/anoxic-br ain-injury-mcs-pvs-recovery/

God bless everyone and never give up hope.
Wendy

Crystalsky

In response to Nana; my husband did not respond to anything except severe pain. He was also very ill with respiratory problems and hospital infections. I still waited three months before putting him in Hospice, after doing extensive research and trying many medications and methods of rousing him. I needed to be as sure as I possibly could. He was a very young 60 year old. I didn't want to let him go.

My heart goes out to you. Wait the full three months or until the doctors do testing such as Functional MRI and anything else that is useful to determine his brain function. Prepare for the worst while hoping for the best. And continue to allow family and friends to support you as much as possible. That is the only reason I'm still sane after all this.

nanapoppop

Thanks for your reply Crystalsky......we are a month into this now, and it is as agonizing to us now as it was the first day! My husband does not respond to any pain stimuli, they test him in some way everyday. We have played the tapes, a drill from his workshop, audio from family christmas etc etc....we are now trying drugs, our children have been wonderful doing research, and contacting experts in the field, and we all feel it is too early to come to any definite conclusion. At the same time, with a glascow score of 3, I know what the future holds for us. I, literally, can feel your pain, and hope this situation never happens to another living human being. It is a sadness I did not know it was possible to feel. I will pray for you and ask your prayers for all of us. I do reach out and accept the kindness of friends, and I deeply appreciate your taking time to reply!

devastated89

I was totally shocked to find a group like this going through the same thing my family is going through. I am 20 years old and my father, who is 40 years old was admitted to the local hospital for strep one week ago today. His fever was 103 and wasn't going down at a rate that the doctors approved so they kept him for observation. they had left the room for what they say was 15 of 20 minutes and they returned to find him "blue and nonresponsive.

They immediately got him to icu and he started "seizuring". It was pretty much a big waiting game. They performed a catscan and told us he had a stroke and the chances of him waking up were slim to none. A different doctor disagreed and said it was a stroke and that the CT only showed imflammation from the "seizures". We live in a pretty small town so needless to say our local hospital wasnt suiting his or our needs. They were rude and had no plan of action to help my dad. My mom finally got tired of it and sent him to where he is now which is OSF Saint Francis Medical Center in Peoria, Illinois. Also known as the number one trauma center in illinois. He seems to be more comfortable here. They have performed a few eeg's and found no seizure activity which is why I put it in quotations earlier. The doctors here say
the CT performed in our town was so unreadable that they don't understand how they even made a diagnosis. He never suffered from seizures, it was only his body reacting to the lack of oxygen which we still see occasionally.

His legs started tremoring yesterday so they put him on versed which is a sedation drug to help the tremoring and to let his brain rest. Today his eyes are open and dialating but no focusing. He is on a resperator and the bpm is set at 12 but the monitor is reading at 22 on average so he's been breathing on his own along with it. This morning they weaned him off the versed to see if they can get another eeg with better information as far as the brain activity goes. We had to leave in order for them to go ahead with the procedure and have not heard back yet. We still have one more hour before we can go back up and see him.

I've tried so hard to find imformation regarding anoxia and it seems so scarce. I've read all these stories with similar situations and it definitely makes me feel less alone. I am one of 5 children. 4 girls and one boy. My brother is the youngest and he is 12 and he is handling this so well. My mother and I are here now. Of course with demanding society my sisters have to work. I am trying to stay strong for my mom but everyday that he doesn't wake up just makes me weaker. I am very close with my father and he is so young it's unbelievable.

Although we had it rough with CGH (the first hospital) we feel so much better now that he is here. The nurses, Neurologists and Respiratory doctors have been amazing and I don't know what we would do if it weren't for them. They are very informative and the hospital even gives us a discount at local hotels so that we don't ever have to be too far away. i have so much faith in this place and I am praying so hard for my dad as well as all of you.

devastated89

I also forgot to note that the doctors here believe the strep closed his throat completely and that may be why he lost total oxygen to the brain. They do not know how long he was without oxygen or whether or not there is severe brain damage. We are hoping for the best.

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