Anoxic Brain Injury/ABI from Sudden Cardiac Arrest/SCA

I'm tossing this topic in for discussion because I'm finding that the stigma of "brain injury" (or the more sweepingly-frightening term "brain DAMAGE") often stops people from admitting that they have problems after anoxia (lack of oxygen) events. Simultaneously, loved ones are often so relieved that the survivor has survived death that the initial reaction of "Whew! Glad we dodged THAT bullet!" is so prevalent they don't understand that there may be hard-to-see brain injury lingering after the event has passed. The survivor may or may not want to look at the possibility of bi due to unawareness or prejudice (who wants to be one of "THOSE" people?) and so the stigma AND injury have to be overcome simultaneously.
I survived an SCA in 1987 and the fourteen minutes of anoxia caused a brain injury for me that I like to describe as "very narrow and very, very deep".
As you can probably detect, much of my brain wasn't damaged, and, in fact, I had some surprising improvements in some of my skills (typing, for example!) but the neurological paths which were damaged caused chaos for years before I went to the University of Washington's Brain Injury Clinic for an evaluation and resulting rehab.
I'm initiating this discussion because online is a great place for people to discuss their fears anonymously and I don't want folks to think they're crazy or alone with their concerns and questions.
Mary L
SCA 1987 while playing softball with friends near a Fire Station.

By Mydad46
Posted July 15, 2008 at 10:08 pm

My father went to the hospital complaining of a severe stomack pain. As a result he had his Gallbladder removed. After the surgery he was alert and talking with us in his room. We left him as we went home he was watching T.V. We recieved a call from the hospital the next morning, informing us that my father had stopped breathing and that they had to resucitate him. According to the Doctors, he was without oxygen for 5 minutes. When the doctors conducted a CAT SCAN and EKG, they told us that he did not suffer a heart attack or a stroke, so they did not have an answer for us as to what went wrong. They conducted an EEG exam, and he does have some brain function. My father has been in a coma for 2 months now. We requested an MRI on his brain, and the exam came back with brain swelling. Can anyone help me out with this stuff situation? I would greatly appreciate your help.

Thank you!

By NWWriter
Posted July 16, 2008 at 7:47 pm

Hi Mydad46,
I'm so sad to hear about your Dad. What a heartbreaking story. And I'm sorry I don't know anything about this category of neuro-psych injury. I encourage you to seek more support and/or information about his condition via a second neurological opinion. I'm very aware of the WALL the medical community can put up when it's aim is self-protection, so if you have any underlying anger about the situation I suggest you not show it if you want to get anywhere.
And for what it's worth, I was only in a coma for a few days but I do remember people talking to me, so don't assume your Dad's completely out of touch while your seeking some answers. Reading out loud to him might be a possible activity to consider.
Mary L/NW Writer

By KareyH
Posted October 17, 2008 at 1:11 am

Mary,
I just came across your story while doing an internet search about Apoxic Brain Injury. My husband Jimmy suffered cardiac arrest on 12/26/08 and was deprived of oxygen for 9 minutes; this is my guesstimation based on my call records to 911.
Jimmy is still in the hospital, although it's a hospital specializing in brain injury.
I've been told that Jimmy will never return home and will require nursing home care for the remainder of his life (he's 45! ). Then again, I've been told at least 5 times in the last 10 months that he would not survive, yet he's still here.
Please forgive me for saying this as I mean no disrespect, but how is it that you are able to post your story? Jimmy can't even remember my name, although he does remember me as "baby", someone who loves him and he loves.
I am very intrigued by your story and want to know more about you and your recovery. Your story is really the only one who gave me hope that Jimmy might recover, at least enough to be functional, which right now, he is not.
I'd really love to hear more about you and your recovery so I hope to hear from ou soon.

By tkandr
Posted October 24, 2008 at 8:59 am

I have a dear friend whose husband had heart attack last week and I believe he had loss of oxygen for a few minutes. Could you please let me know what helped you recover from the brain injury you sustained and what she can do in the early stages to help. Also what responses should she look for to see if he is actually responding in these early stages? I can't find any information like this on the internet so if you have anything that would help me guide her to try things that would help him, I would greatly appreciate it. Thanks. Carol

By Axykatt
Posted November 5, 2008 at 6:12 pm

KareyH,

On October 15th 2008 my husband collapsed from a ventricular fibrillation. Our 17 year old adopted daughter was with him at the time and immediately called 911 and began CPR. The ventricular fibrillation was caused by a cardiomyopathy that was only diagnosed on August the 26th following a stroke. He was almost entirely recovered from the stroke and his prognosis was good. Although our daughter began CPR right away (she didn't waste any time with hysterics or trying to wake him since she knew about his heart) he still seems to be suffering from anoxic encephalopathy. His initial EEG was normal and MRIs and CTs showed no new brain injury, but he still has yet to make any significant improvement. He opens his eyes and turns his head towards voices (inconsistently), but doesn't respond to commands or show much real awareness of the world around him. The doctors won't tell me what the stages of recovery are, or what I should be looking for when I sit with him. He is being weaned off the ventilator this week, and has no organ shut-down, but that is all we can really say. Oh, one more thing, he's only 25.

I would give anything for just the level of awareness your husband has. Can you tell me anything about the process so far? What levels did you go through before he could recognize you at all, or call you "baby"? What treatments have you tried? Has anything helped? My husband, Vic, is so young but it seems like everyone but me has already given up on him. Any information would help give me direction. I hope your husband does continue to recover and my thoughts are with you. Have you tried Ambien? Those trials looked very positive in the UK.

Thank you,
Alexandra

By terriwinget
Posted November 9, 2008 at 6:31 am

Hi Alexandra & all,
I'm very sorry to hear about your husband Vic. I hope that you've found there are a lot of people here who care and will support you through such a difficult time. I am glad to see that this topic is being added to here, as there is very limited information regarding positive outcomes after ABI on the Internet. I know this because I have been researching for over a year now.

On Sept. 29th of 2007, my husband (who was only 38 at the time) also had ventricular fibrillation and suffered an anoxic brain injury. I know exactly how you feel, looking for answers that no one can provide for you. It's very difficult because every person is different and the outcomes are never identical. Patience, time and hope - keep those three words in your head at all times.

We are not sure how long exactly my husband John was w/o oxygen. I was with him when he collapsed. I started CPR on him immediately while my neigbor called 911. They got here relatively fast, but they had to shock him 4 times over the course of 20 minutes before they stabilized him enough to transport him to the hospital. They put him into a medically induced coma and placed him under hypothermia treatment for 24 hours. It happened on a Saturday morning and by Monday morning they were able to take him off of the ventilator. On Wednesday, he woke up, but they still had him heavily sedated. John's recovery was remarkable and very fast in comparison to other people's experiences, but there were a lot of steps to get to where we are today.

He was in the hospital for two weeks. During those two weeks, he had no memory of anything. Not past or present. He was very flat emotionally, said the most off-the-wall things - very much like Rain Man. I was told at the time that he might not ever recover. In the hospital, he had PT, OT and ST. The plan was to transfer him to an inpatient rehab facility, but instead - I brought him home and had therapists come into our home. He needed 24 hour care, so I took FMLA at work for two months. I hounded him constantly - asking 50 million questions a day. We played a lot of games, like cards and dice games to help stimulate his brain.

When I look back and read the evaluation his case manager wrote when she first met us...it's crazy to me. I still can't believe how bad it was. He couldn't remember anything for two minutes, didn't know how long we'd been married, couldn't name five presidents... After about two months, things were really starting to come together, so we took him to the University of Washington to have an all day neuropsych evaluation. He did mostly well, but there were still some deficiencies with his executive skills (being able to plan, organize things and thoughts, problem solving, etc...). But, he felt good and was becoming more like himself. We both went back to work by the first of the year. The past year hasn't been easy because of the "lingering" things like his personality changes and stuff like that, but as a whole -- he's alive, functional, goes to work... A year ago, I would have NEVER thought this was possible.

So, John was fast... But let me share with you another story that just might put the icing on your hope cake.

http://www.caringbridge.org/visit/jasonvoigt

The link above is a journal that has been written by Jason's mom. Jason went into v-fib on Oct. 1st. I think that it will really help give you some kind of a timeline. Jason is the brother of one of my coworkers and only 31. I think that story might help you more.

For now, I would just keep doing what you're doing. All of John's doctors and therapists were great, but TIME was most important and the best "therapy." The brain is a crazy, mystery organ, but heals itself every second. Keep in mind also, that they probably still have him on a lot of different medications?? Do you know what they have him on right now?

Just keep talking to him and touching him. He's going to come around - I just KNOW it. I bet when the ventilator comes off...you will start to see some changes. It takes some people more time to come out of the coma state, but once they do - LOOK OUT! That's when the fun begins.

As for friends...I KNOW!!!!! One of my closest friends, when I needed her the most refused to come around because she "was uncomfortable." Needless to say, we are no longer friends. Just keep coming here. We'll help you out. XOXOXOX Hang in there and keep posting.

Terri

By fishermanguy
Posted November 13, 2008 at 8:51 am

Glad to find this group. I had a SCA in November 2006 and was given CPR (chest compressions only) for 6-7 minutes by a co-worker until the EMT's arrived with the defib. Like many of you I was in an induced coma for a while and then spent a week in CCU and though I was conscious and I could remember things before the SCA, I wasn't making "any new memories". Upon release, I was foggy but I started making more memories. I tried very hard to hide any effects of the SCA and was to ease back into work in less than 60 days. I've been told I'm on the top end of the neurological studies but I know that I'm not quite right.
I just started a study with 7 other SCA survivors and I'm the only one able to work (I am only part time now, full time was too much for me). The study has opened my eyes to the impact of the SCA on the brain and it explains much of what I've been feeling. Like Mary L, everyone is so glad I survived, that my new shortcomings don't seem to be effecting others. However, before this study I was very frustrated with things that I couldn't do as well as before, but now the pressure is off. Pschologically I feel better but I now have to deal with my performance at work and possibly make a change to a job that doesn't constantly remind me of my limitations.

By Axykatt
Posted November 14, 2008 at 4:31 pm

Dear Terri,

Thank you for your reply and the link the the website. I will be looking more closely into their story.

Today is day 30 since Victor's collapse. He is off the ventilator and has been on no sedatives since the fourth day of his "recovery". The only medications he is on are his heart medications (he has cardiomyopathy) and Atavan once a day in case he has seizures. He hasn't had any since day 2, but they just want to be sure.

He hasn't progressed as well as the doctors hoped. While he can't be labeled as "vegetative" because he has obvious responses to slight discomfort (like sitting in a position he isn't comfortable with, or having a dry mouth) he is just barely meeting criteria for "minimally conscious". He does not interact with the people who come to visit him in more than a very basic way, such as turning his head to the sound of a voice or brief periods of visual tracking. He receives physical therapy every day, but there has been no significant improvement in the last month. Today I am bringing him flash cards to try to help him communicate in some way.

I miss him so much.

-Alexandra

By frustratedaughter
Posted November 16, 2008 at 6:53 pm

Terri,

Your message makes me feel so hopeful. My mom suffered SCA 1 week ago. They did the hypothermic treatment for 24 hours, she woke up and was taken off the ventilator. She is really confused. She bounces between 3 months ago and 1961. She keeps realizing my dad died and becomes really hysterical. He died 8 years ago. I can see progress and I really believe she'll get back to close to where she was. She was a brillant woman. She'll be discharged to a rehab center this week. She's 81, but her heart is in good shape. Reading all these stories gives me so much hope. When I'm with her, she keeps repeating herself over and over again, but there is a little difference each day. She is retaining more and more information. It's like her mind is going in circles though. The one thing that is amazing is that she has turned into the sweetest person - she actually used to be really difficult. She is much nicer now - it's so strange. The scariest part is wondering if she'll be able to get back to living on her own and going to her house. Reading these stories do make me think her progress is good. Even though she remembers many things about the recent past, she can't remember anything about the house she has lived in for the past 30 years. I don't know why...Maybe if she saw it?

By terriwinget
Posted November 16, 2008 at 7:38 pm

I am so glad that sharing my experience can help and give you hope. Frustrated Daughter, I can very much relate. It has been so interesting to find so many similarities in one's road to recovery after SCA and brain injury.

John was stuck in 1997 for about two weeks. I still haven't figured out what happened that was so significant in '97. :-) He repeated himself constantly also. When he had collapsed, he fell on his face and broke his front teeth, so for about 3 days straight all he kept saying over and over again was, "My teeth are #$@% up. His swearing was out of control!! He even swore in front of his Mom, which is something he would have never done before.

One thing about your Mom's home... When I was bringing John home from the hospital, he told me that I was going the wrong way. He thought that we still lived where we had 13 years prior. When we did get home, he didn't remember a lot of our stuff. It was like Christmas for him for a while. I kept finding him going through drawers, going "Hmmm."

Although, I sure do feel like it helped him to get back home to a less confusing environment than the hospital. I bet when your Mom gets home, she will progress more and more each day.

It sounds to me like she is recovering very fast!! That is great! The hypothermia treatment is so incredible. I firmly believe that it makes all the difference in the world for a positive neurological outcome. It's funny that she's a nicer person now!

You sound like you have a wonderfully positive attitude and that sure does help!!

I am glad that you found this site.

Hang in there!!!

By terriwinget
Posted November 16, 2008 at 7:57 pm

Alexandra,

You are such an incredibly strong person. My thoughts, prayers and heart go out to you and Vic.

Do you have close family nearby who can help you through this? I am so sorry for the grief you are feeling. And it is grief... Many people don't understand that part because your loved one is still alive in their eyes. But it is like having your insides torn apart because you miss him SO much.

I know how much this situation can consume your whole existence, but please try to take care of yourself too. Even it means taking a day off to get some sleep.

Please don't give up hope. You want to prepare yourself for anything, but it's not time to give up hope yet. He has a wonderful companion to help pull him through this. I think the flash cards are a good idea.

One day at a time, remember that. I will keep searching for stories to help you through.

XOXOX

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