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Anoxic brain injury

abice
0 Recommendations

Can a person get better that has an anoxic brain injury? Everything I read seems so negative.

Explore topics in this discussion:

Schizophrenia Surgery Klonopin Anoxic brain injury Sudden cardiac arrest Bypass surgery Bipolar disorder Drug abuse Beta blockers Weakness Memory Heart attack Depression

28 replies

mosessovn

Anoxic brain injury encompasses broad spectrum of deficits and severity. While in severe cases there may be mininmal improvement over time, there are many centers putting efforts into this. I would recommend seeing a neurologist and a physical medicine & rehab physician who specialize in this. Physcial handicaps can be improved with phyisical therapy in some cases. While often bleak outlook, every case is individual and many specific factors are involved, and there are occasional stories of significant albeit unexpected recovery.

Dr Vince Mosesso
Medical Direcotor, SCAA

JuliePotter

I know that every case is different and no one can predict exact outcomes, but to be more specific re: the anoxic brain injury it mostly caused damage to his short term memory. We have talked to neurologist and therapist.... they really don't have any answers or advice on any direction to go on any issue. This is the most vague, negative, frustrating medical condition I have ever heard of!
DOES ANYONE HAVE ANY PERSONAL EXPERIENCE WITH SHORT TERM AND SOME LONG TERM MEMORY LOSS AFTER SUDDEN CARDIAC ARRESST? We would so greatly appreciate anything!!

Phud

Unfortunately, I do (maybe). I wasn't down long, maybe 5 minutes, and the MRI's and CAT-Scans came back normal. However, I'm now out about 3 months from my OHCA, and do notice some changes. While I used to be able to juggle 5-10 individuals working for me on independent tasks, this has gotten significantly more difficult. I can never remember the little things, and have significant difficulty in remembering names and some proper nouns off-the-cuff. Often they eventually come to me, but it takes awhile. I seem to have basically mentally aged about 30-40 years in a week. The good news is that the incidence of my forgetting things on the stove is pretty low (about twice so far), but as a University prof and researcher I'm a bit frustrated at the memory. That being said, I have no guarantee that it's actually the anoxia. I'm also still in the process of scaling up on the beta-blockers, and from what I've read alot of what I'm experiencing could be related to the lethargy induced by those.

A few tricks I learned from some other members which works. For some reason, my short-term memory problems are much worse if I don't verbalize what I'm trying to remember. About a month ago I got a digital voice recorder to use to remember important commitments until I could get back and input them into my Outlook Calendar, and what I found is that the process of verbally dictating the "memory" into the recorder seemed to solidify about 90% of them so I didn't need the recorder. I still use it (and look weird doing so), but simply using it seems to have eliminated my need for it. This may only work for me, but if I remember Psychology class right from 20 years ago this is a common method for induction of long-term memory from short-term storage.

I haven't (to my knowledge) had any incidences of long-term memory loss that couldn't be attributed to the drugs they had me on in the hospital after my "event".

Hope somebody finds that helpful.

Alan

NWWriter

Hi abice and Julie,

I'm a survivor of SCA/ABI in 1987. My ABI is pretty undetectable by others except those who live with me.

After seven years of chaos, I finally talked to my physician about it (I kept forgetting!) and he referred me to a clinical psychologist whose testing revealed the very limited-but-deep level of the damage.

At the moment in the testing when my short term memory damage became dramatically evident, the tester had a hard time believing it was there. We had been sailing along through the test when suddenly there it was. I had no recollection whatsoever of a picture he'd shown me just a minute before. And it wasn't that I couldn't recall what the picture looked like, it was the fact that I couldn't recall there even BEING a picture.

I learned a little bit about using my voice to help me (like Alan was describing) but I didn't get the real help I needed (like the task timer, etc.) until I did rehab at the University of Washington Brain Injury Clinic. Even though my speech is very good, they had me work with a speech therapist who was able to help me track the neurological paths that I can depend upon for help.

I suggest you get an assessment done by a brain injury specialist of some kind if possible. The assessment shows what works and what doesn't work and a therapist can help you start accessing the neurological paths that work.

It's hard to work on this because of the stigma we ALL have about "people with brain injuries". We think "they" are all easily identified, but the reality is that many of us aren't. We're flying under the radar and could use some help. Our loved ones have to work through the stigma, too, because ignorant people want to stick them in a "to be pitied" place, which can be VERY ISOLATING. And who wants that?

And the initial relief we feel about our loved one surviving the SCA can make us deny that the event left some things changed forever. Yup: forever. It sucks at first, but I've found that the gifts of humility, compassion and empathy have made me a better person, so I'm ahead of where I would have been if the sca hadn't happened.

Recovery can occur over time, but the impatience of others will make survivors hide the injury in order to protect ourselves (and our loved one) from the impatience. I forget all sorts of things, but have learned to hide my forgetfulness in order to keep the conversation/situation running smoothly. You'd be surprised at how much STUFF isn't crucial for a fully functioning life. But oftentimes people get OBSESSED with making me remember some past detail, when what they want me to remember really isn't at ALL important to the task/discussion at hand.

"What's your point?" can be an effective phrase in moments like that....when I remember to ask it. ha!

So I'm glad you both spoke up. I'm encouraging you to keep going in your own awareness, acceptance and recovery while you support your survivor in theirs. You never know what's around the next corner and, if it's good, you wanna be ready.

Mary Lyons
MaryLyonsNow@msn.com

PS: and today, when I started to sign in and my e-mail address appeared, I clicked it and it remembered my password for me!! Yay Brian and Beth!! and I hope that's your names... ha!

abice

Alan,
Thanks for your response. I do think the drugs (beta blockers, antiarhythmia drugs, klonopin, etc.) play a role in keeping my husband even more in a fog than the actual anoxia has caused. They are backing him off one of his medications slowly - hopefully that will not cause anything to get out of sorts. I know that these things (voice recorders, calendars) would help him and that has been suggested from the get go by all of his therapists. Our issue right now is even remembering to use those tools. He is slowly becoming more aware, but it has been such a slow process. He does not have alot of self motivation which is so frustrating b/c I am not having any luck helping him with that. I know it is probably depression trying to set in, and I was told to expect that, but our cardiologist does not want to put him on any antidepressants.
I know I have to try and be patient - it is the unknown of how things will ultimately be that is the hard part I guess.

Thanks for your input! Good luck!
Ashley

abice

Dear Mary,
Hi - thanks for responding! It sounds like you have a good outlook and are positive person. My husband has had a neuropsych evaluation - We had that done about 6 months into this. The results were not good, of course it did not really tell me anything much that I hadn't already noticed. Just confirmed it I guess. We will more than likely get another one at the year mark which will be coming up at the end of August. Hopefully they will see some improvement. I know I have seen improvements, just really slow though. I am constantly thinking of what I need to be doing to help him - I just want to be as proactive as I can and not give up on him. I am still having a hard time getting a handle on the fact that this even happened. I assume that will eventually come. Patience has never been one of my strong points!!

Thanks for your encouragement!
Ashley

NWWriter

Hey Ashley,

Well, I think abi is one of the most underdiagnosed injuries there is, and the numbers are only going to increase as the number of SCA saves goes up. The stigma and prejudice are difficult to overcome, though.

If you've seen improvement in your husband, that's good. Don't keep quiet. Call and consult with somebody. And if you're dismissed or disregarded, find somebody who's interested in working with you in developing a strategy. "Routinization" is the key to success for me and many other abi survivors, so find a therapist somewhere who loves to "routinize" (pronounced "ROOT-in-ize", as in "routine"). It's a way of transferring a short term memory item into a more reliable long term memory hub. The brain is good at figuring out alternative routes in the face of neurological damage and the research is improving every day.

The Brain Injury Association of Washington, www.biawa.org, is an organization I belong to, and the National Org is the Brain Injury Association USA, www.biausa.org. Most of their work is on traumatic injuries, but you can get help and information about abi as well. Bob Woodruff(CBS newscaster in Iraq) survived a tbi and that's really helped bring tbi to the forefront, but abi's still a distant second when it comes to awareness.

You sound like a great supporter. It's a real piece of work to get over the shock of the SCA. It's SO DRAMATIC and often strikes people who seem to be FINE. And young and healthy! We are so quick to celebrate a "save" that we don't realize another battle may have just begun...

So tell your story. How did your husband survive the SCA?

If you want to talk offsite first, my e-mail address is marylyonsnow@msn.com.
Mary
PS: I almost forgot one of my FAVORITE nursery rhymes about "patience" (which isn't one of my forte's either....):

Patience is a virtue.
Virtue is a grace.
Both put together
Make a very pretty face.

lolol isn't that smarmy?!?

NWWriter

Hi Alan,

I was the one who said my verbal memory is stronger than my visual memory, and so I say things out loud to remember. I've always assumed I wouldn't benefit from one of those little recorders, but you've convinced me to try.

I've gotten better about remembering stuff that's cooking on the stove, but I still forget sometimes. In an effort to "visually" remember, I've recently started turning the light on over the stovetop every time a burner's on. That's helping.

But I've slowly-but-surely replaced all my small appliances with models that turn themselves off after a certain period of idleness (the iron, the coffee pot, the curling iron, etc.). That's been a relief!

And have you seen the newsclip about the guy who just wrote a book about everybody should wear name tags all the time?!? I'm with him!

Oh, and what's OHCA stand for?
Mary

Phud

Mary

Thanks for the suggestion about verbalization - it does seem to help with remembering some things. It doesn't help with the "oh crap, I can picture what I want to say in my head but it won't come out" moment, or help me remember names. Again, most people asside from my wife just say "welcome to getting older". Unfortunately, I "got older" about 20 years over a 2 day period.

FYI - OHCA stands for Out of Hospital Cardiac Arrest. That's what most of the scientific articles refer to the situation as (so far, haven't heard of anybody with SCA that had it in a hospital!).

Alan

wbabab

Alan

I am Bill. I am very fortunate that I have not had an SCA yet. However, I noticed your comment about an OHCA. I had a heart attack while I was in a hospital having stints implanted and the staff did not recognize it and set me home. That attack did enough damage that I am now susceptible to a SCA and had an ICD implanted last September.

I have had some memory problems. Nothing compared to yours. But I have found that I work on math and physics problems. I studied these subjects 40 years ago in school. I find that it helps me with thinking. I also read a book a week. Sometimes I "test my self" with questions about a book I have read and then look up the info to see if I remember correctly. Some days are better than others.

Hang in there you will get better!

Bill

mdiprete

I applaud all of you in your efforts to regain your bearings.
I do not have experience, but offer this:
One year to the day after my 14 yr old son died of cardiac arrest after a XC race, his best buddy (a part of our family) was hit by a truck, and suffered TBI. The lack of O2 to parts of his brain resulted in loss of short-term and long-term memory. My surviving son sat by him and helped him re-acquaint with some pathways of past experience.
Since memory relies on associations, it helps a good deal to replicate the experiences that used to hold important memories. Use of photos, or real time experience. Essentially, you can reconstruct association pathways in the brain... Part of the routine that was spoken of should be to include making the motions of past activities, and recalling verbally what is, or was happening.
IT continues to improve after 1 and 2 years.
As a parent of a boy who suffered unnecessary death, and who took a full year to grasp what happened, I have lost a lot of my functional memory. I do not understand the mechanism,, but now know it is associated with trauma, and deep grief. I am a teacher, and have trouble with these hurdles. I learn to let others know that if something is important, they should feel free to remind me, as needed. Not a great solution, but all I can manage.
THANK YOU, survivors, in your striving to understand and move on with difficult circumstances. It teaches us all what is most important in life. Please remember you are thought of, with love, and I am happy you are alive and able to love life. Don't hesitate to voice concerns, and find those who will listen and support.
Maura (Joe's mom)

ahat

Thanks to all for first raising this question and for the ongoing comments. My husband suffered a heart attack (OHCA) near the end of April resulting in Anoxic Brain injury. It seems to be an easy diagnosis for the doctors but that is where easy ends. I understand the lack of patience, There are times when I feel the same way. One thing we are trying is the Nintendo program, Brain Age. I have to start the activity and remind him to use it but he has gotten better with the program. I am praying that it also helps with the overall issue. Later we will be faced with long term disability issues because he can no longer program sw for computers. There are times when he does not remember how to click a mouse. I'll continue to follow this string and will update with any changes here.

abice

Dear ahat,
Thanks for responding responding to the discussion. I totally can relate to the Doctors giving this diagnosis quickly and then that is it. There is not very much anyone seems to know about type of brain injury. My husband suffered his sudden cardiac arrest going on 10 months ago. We have come a long, long way and there are days when I know I should be so thankful and then there are the days when it is just so frustrating. I am sure you can relate.
I just purchased the Nintendo DS and the Brain Age game a couple of months ago and I am trying to get him to remember to use it as well. There are just not enough hours in the day sometimes you know? If you have any questions about long term disability I would be glad to help. That can be so stressful!!! I see that you are just right down the rode from us - it is a small world. I would love to hear your all's story. Good luck to you and please let me know if I can be of any help with your questions!

Sincerely,
abice

wbabab

ahat

I am Bill. I have read your story and can only imagine the struggle you are going though. I did have a thought while reading. You should not wait on long term disability. The government is not easy to talk into long term disability on SS. You should start now. You will be rejected, as all are, the first time. I would suggest to go straight to a disability lawyer. There fees are reasonable and affordable. They know the system and will make it happen to your benefit. I do not mean to impose, but I know the frustration in dealing with the government on this issue.

Best of luck
Bill

NWWriter

Hi Alan,

Some other thoughts on your abi story.

I can really relate to your remark about other well-meaning friends saying "Welcome to getting older" when hearing of your study of your abi.

After my first few years of bi awareness, I stopped telling EVERYBODY about my abi because I realized that the well-meaning comebacks of "Welcome to getting older" or "Oh, I do that all the time" or "Oh, you're FINE" were making me forget (deny) how frequently I was "having problems".

Folks just want to encourage us. They want us to stop worrying because they love us. But they don't realize that their definition of a "brain injury" is often limited by their ignorance and their prejudice. We often "look" just like them. We're still "the same old Mary/Al/Joe/Christy" that we used to be.... They're SO HAPPY we're still here that they don't want to consider that the "old us" really did "die" and we'll do best by learning about the "new us".

I tell people that my "over 40" forgetfulness is aware of itself, as in "Why did I come into this room...?". But my "abi" forgetfulness walks all the way through the room without stopping, not aware of any "memory" that's been lost. I may then remember later what I'd originally thought of, but it's still hit-and-miss as to whether I'll finish the task.

I had to learn to "let go FAST" when a word or face or name just isn't coming to the surface. I nod and smile much more now than I did before my SCA!

Sentence fragments/lost words can be managed with a dismissive "oh, you know!" (accompanied by a casual wave of the hand) and people almost ALWAYS pick up the sentence while I just nod a "Yeah" as they finish the thought for us both!

My abi has taught me about my prejudice and privilege. I've realized the luxury I have in disclosing or not disclosing the existence of my abi.

People in wheelchairs, people who aren't "white", people with speech impediments, etc. can't make their "differences" go away until they see a "safe" time to disclose their situation.
And that has been a lesson in humility for me.
Mary Lyons
SCA 7/16/87 while playing softball right around the corner from a Seattle Fire Station (and currently on the downhill side of my eighth ICD battery)

Ivy

My son, Jim, had a sudden cardiac arrest (possibly due to medication interaction) when he was 29. That was 3-1/2 years ago. At the beginning he was in a coma and we were told to expect the worst; later when he started to come around we were told to expect that he'd never walk again. Today he is certainly not the person he used to be but he has regained most of his physical limitations, although he has some problems with fine motor skills. He struggles with short term memory loss and his executive skills but we are very thankful that he has progressed to this point. We see small improvements all the time and our hope is that he will eventually be able to be independent. He is now living with us and has a personal care attendant during the day. Do not feel discouraged and pursue all avenues of rehab that are open to you. You may have to be persistent with the insurance companies but it will be worth it. If you have any questions please feel free to email me at ivy.oneill@power.alstom.com. Keep the faith!

Louie1970

Hi my name is Louie I became disabled April 2005 I ate some bad shrimp and went into anaphylactic shock I suffered a pretty bad anoxic brain injury. I was in a coma for 2 days I was in the ICU for 18 days; they transferred me to a Nero rehab hospital. I needed 24hr care when I started coming out of it I knew I was in trouble, but I did not want to accept it I told the nurse to help me out of bed so I could use the bathroom she said that’s not a good idea, well as soon as I got up down I went. I had to use the bathroom in bed, the nurses had to feed me because I did not have the dexterity in my hands to hold the spoon, I got better over the next few months I had allot of trouble getting words out, I was like in a fog. I am lucky in that way the fog went away and my speech and memory retuned about 1 month later I am 100% back to normal mentally. I think
I can remember everything but my stay in the hospital. But not so fortunate physically I still use a walker, I can walk short distances with a cane, my hand dexterity is not good, difficult to type this I have allot of weakness in my legs I work out and walk every day but my legs just wont get stronger, it's like the harder I try the worse it gets. At this point I almost would rather have cognitive disabilities rather than physical, but I can drive I had a handle installed on my steering wheel because of my hand dexterity problems. I drive a manual ford F250 super duty diesel. I know dealing with cognitive problems are frustrating "been there" but what is worse of the 2 evils?
Good luck to all I know I will get better I have been to hell and back if I can do it you can to.
Louie

bad60ft@yahoo.com

NWWriter

Hi,

One of the stupidest (and most disabling) parts of Anoxic Brain Injury/ABI is forgetting that I forget.

I just re-read the postings on this discussion and remembered that little digital recorder I was going to try! How's everybody else doing?!

...she says as she heads off for a Radio Shack somewhere...

;)
Mary Lyons
SCA survivor, 7/16/87
MaryLyonsNow@msn.com

abice

Louie,
Your story jumped out at me b/c my husband suffered sudden cardiac arrest 15 months ago at age 37. He sustained an anoxic brain injury as well. I am glad to hear of your improvement. My husband has improved alot. Did the same thing, ICU, then to the step down unit and on to a Neuro rehab facility.
I can totally relate to your the trouble you talk about with the weakness in your legs and dexterity problems. We are still dealing with that as well. He has cognitive issues as well. Mostly his short term memory which is basically shot and still gaining his long term on some things. Decision making skills are still not up to par and staying on task sometimes is difficult. I can not let him drive for fear of his response time not being quick enough to avoid an accident.
I think in the beginning of this whole event I must have been focused on the physical aspect b/c he could not walk, feed himself, sit up, etc. In the long run though, your mind is what is going to get you through life and help you to take care of yourself. I would give anything for the cognitive issues to get better with my husband. They cause a tremendous amount of strain on our marriage and our family and I wonder every day how we are going to make it.
I wish you the best of luck on your recovery. By the way, are you taking Glucosamine? That may help with your legs.

Ashley

Mary1

I am literally surrounded by little note pads where I write things down as I go through email, etc.! I just need to remember to look at the notes!
:-)
Mary P.

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