Brain Injury Recovery / MCS / PVS / Anoxic

My name is Wendy and I am the mother of a 13yr old boy who sustained a Severe Anoxic Brain Injury when playing in his friend's backyard in May 2008.

There is so little information available about anoxic brain injury recovery and I feel it is mostly due to the fact that these patients are scattered all over the country and that there is no "central place" to turn to JUST for ABI treatment and recovery information. I have managed to gather together a small amount of what I feel is promising information. I am hoping to find a way to reach all families who have a loved one who has sustained a "true" ABI (not TBI which is dramatically different) resulting from being without oxygen for more than 4 minutes regardless of whether or not they have showed any recovery at 60 days post injury. I am an RN student graduating May 2009 and I believe there is hope and potential for recovery for everyone ... we just all need to share our successes and failures at recovery and join forces together (as there is power in numbers) to bring our loved ones to the medical community collectively so they can't treat us like we are hopeless and create a "central place" for ABI information. Please contact me so we can support each other and share information. I am hoping to start a website "ABIrecovery" I urge everyone to post here on INSPIRE and post contact information too. Please don't hesitate, we need each other! I hope to hear from EVERYONE . . . God bless.
I can also be reached by email wmd723@aol.com or on skype (please email me for my skype id).

Edited April 1, 2009 at 5:58 pm

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Hi Wendy,
When you say that someone who begins to receive CPR within a minute after a heart attack can make a full recovery even if CPR lasts up to 30 minutes, I'm very interested in what you are basing this information on - have you heard any stories that prove this is true? I've been feverishly surfing the net, hoping to find any information that might help me get through my current situation (or I should say, my sister's... but mine as well). I had to administer CPR on her (immediately following cardiac arrest, as it happened right before my eyes). The ambulance took approximately 17 minutes to get there and I was instructed by 911 to do only chest compressions - about 2 per second until I reached 400 - then to breath twice into her mouth and then to start the compressions again to 200, then breath into her mouth again twice, then to continue with 200 compressions/2 breaths until the ambulance techs took over (they had to use the defibrilator and continue chest comps until she began to breath again (all this, in the 20 minute time span).
My sister is in a light coma - opens her eyes, but won't talk (she has a traech for now, which they have been switching to smaller ones over the last few weeks which should help her regain throat muscle control without too much trauma over time).
I read all the stories here and I am so deeply touched by all of them, however, I haven't seen much on anyone having gone without oxygen (as in breathing) to the brain for 20 minutes... She is still alive, as I mentioned, and physically, she is in top shape... because she isn't talking it is hard to say how far "gone" she is as far as brain damage goes. She responds to us quite alot - mimicks our facial expressions like when I'm scrunching my nose, blowing a kiss or she'll give a thumbs up and move her legs on command. These to me are all good signs, but they consider her to be in a light coma (?) and unfortunately the doctors don't see as much response as we, her family, does. Maybe we are too hopeful and so we are seeing things that are just not real? Some days we get hardly no response and other days she follows us with her eyes and smiles at us.
So... that's it in a (really small) nutshell. You mentioned you'd like to hear about recoveries from lack of oxygen over 4 minutes; perhaps my story isn't quite considered "recovery" as of yet, but I'm hopeful still and perhaps if what you say is true about the CPR being administered immediately, there is still some chance that my sister will come back to us with minimal damages...
Please let me know if you heard this information from a good source or where you may have gotten your info - I'm always looking for sources that will give me a positive outlook on the current situation.
Take care,
Sandra

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Anyone looking for hope - check out the following book by Paul Harch called "The Oxygen Revolution". You can find it on Amazon.com if it's not in your local library or bookstore.

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Hi Sandra,
I am not an expert or MD or anything. I have read a lot and researched a lot.

The example I used was very simplistic ... but the point I was trying to make is that it is important to try to find out the "actual time" the brain was without oxygen and blood.

The only information known for sure is "4 sequential minutes" of no oxygen and blood to the brain is detrimental. From there, the amount of recovery is very individual.

You are welcome to email me wmd723@aol.com.

NEVER give up hope and be patient.

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Hello,

For all those who are reading my story --- My mom has shown a lot of progress in the past two weeks. She is fully conscious now, responds to all conversations / commands, watches TV, moves her hands / legs, is trying to speak, manages to speak a full audible sentence once in a while (otherwise just moves her lips). I am bringing her home in a few days. I am sure she will be able to walk on her own very soon.

I don't know how much of this is thanks to homeopathy and prayers, besides allopathic medicines, but somehow, I don't care. As long as there is progress.

My sincere request to all here - please consider homeopathy / ayurveda as valid alternatives, whenver they are available. They can co-exist with allopathy, and do not bring about any harm (at least).

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My name is Tanya and I recently stumbled across this site in desperate research to find anything that could help me find out more about my grandfathers condition. About noon today I was at work when I got a frantic call from my grandmother telling me that my grandfather had collapsed on the bathroom floor and wasn't breathing. As soon as I could I got there, to find the parametics performing CPR on him and trying to shock his heart back so they could get a pulse. In about 5 minutes they got a pulse and moved him to the ambulance, where they then put him on a helicopter and sent him to the nearest hospital. When I got there( the hospital) I found out that he had suffered 4 cardiac arrest episodes and was now being induced into a coma so that they could put him in theraputic hypothermia. I was told that my grandfather had been without oxygen for a total of 10 minutes and now wait to know whether or not he will have brain damage or not and, if he does, to what extent it will be. I have found all of your stories very inspirational and as a LPN student continue to have hope in the wonders of medicine and pray that he will be okay. I hope that all of your loved ones are well and healthy and ask that everybody put in a little prayer for my grandfather and the others who have been through so much and have much more to face in the future. If any one can tell me anything they know about theraputic hypothermia I would greatly appreciate it.

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Wendy;

I appreciate this discussion and agree wholeheartedly with your vision to offer encouraging words of hope. I too believe there is potential for recovery for everyone! I joined this group because of the need for community, to share any successes/failures at recovery from ABI. I too believe there is power in numbers and that our loved ones deserve our joint efforts to increase awareness among the medical community. I'm tired of hearing these words come out of doctor's mouths, "hopeless, no meaningful recovery."

I agree wholeheartedly that we need a "central place" for ABI information. Please place me on the list (if there is one) as a volunteer to support each other in sharing information and for any way that I can assist you in starting "www.ABIrecovery.org."

Sincerely,
Joyce Tyson
joycat_tyson@yahoo.com
Grandma to Abel -- http://www.caringbridge.org/visit/abeltyson ~~

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Hi to everyone who has been reading and posting here. Although this is a very sad and tradgic way to be brought together I am glad to see people coming together. I apologize for not updating here, but I am less than 10 weeks from finishing my RN. The demands of school and my son's needs are overwhelming me. As soon as I finish school, I will be focusing my efforts and sharing information and research and asking for everyone to share their knowlege too. Please don't hesitate to share your difficulties as well as your successes. Any information is helpful.

Anne, please contact me by email wmd723@aol I would like to share something with you.

God bless everyone.

Wendy

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To anyone who is exposed to ABI / TBI please take the time to view this:

http://www.cbsnews.com/video/watch/?id=3538297n

please share your thoughts and experiences as they are so important to all of us in this situation.

Thank you. Wendy

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Hi my name is Jonathan,

My fiance Tiffany, went into cardiac arrest last year, she laid back and went into agonal respirations. I thought she was having a seizure. It was around 3-4 minutes that I called 911, and they had me start CPR, i did that until the ambulance came. She was in a coma for about a month, and in the hospital for 3 months. It has been little over a year since all of this happened. She has made a very good recovery from the point that she was at, she couldn't walk, or talk, or remember anything for more than 1 minute. She still has a long way to go though, she still has short term memory problems, and a few other difficulties. But I thought for those of you who would like a positive story about recovery her's is a good one. Check it out at http://www.carepages.com/search?x=0&y=0&search[terms]=tiffany+peters, then scroll down the page to tiffanysprogress, you will have to create an account, it's free. Her mother has documented much of what we have been through and some of the therapies and treatments that we have tried. But I do recomend the story because there is not a lot of information out there on recovery.

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Hi everyone,
First, I want to thank each of you for your responses to my email address. WMD723@aol.com

For those of you dealing with ABI or TBI please view these websites:

http://www.hbot.com/free-hbot-video-recovery-of-curt-allen-after-hbot-treat ment


http://www.cbsnews.com/video/watch/?id=3538297n

Please respond with your thoughts and experiences.

Thank you ,
Wendy
wmd723@aol.com

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Hi Wendy,

I am so sorry to hear about your son. I am going through something similar with my mom. She feel into cardiac arrest about 3 weeks ago and I was told that she suffered a lack of oxygen that caused ABI. This was so devastating to hear since it all happend so suddenly. She was in a coma for about 4 days. At about the 2nd wk. the Dr's said that we had to have a trecheostomy placed since the vent couldnt not be left in for more then 14 days. We were assured that this would make her more comfortable. I would have to disagree. She now seems more anxious then before, she started to roll her eyes more, something she never did before. She sweats a lot from her face, and her tempature is always at 99.1-99.7.

I keep getting told that the mom I once knew will never be the same. If im lucky she might one day be able to sit. This has been the hardest blow in my mylife. Maybe its my faith but I feel that I see things Dr.s dont, we are with her all day and night. Her pupils are always responsive to light, she feels pain in her legs and arms. I just get so frustrated that Dr.s are doing nothing to help her or treat her since they assume she will never be the same. Is this even legal. They dont seem to care to give her any sort of physical therapy so that her joints wont stiffen. It breaks my heart everyday to see her this way.

I am 100% with you and I feel that we all have to join together and fight for more research on how to treat our loved ones. There have to be some sort of treatments they can get. The Dr. says to just always visit her and talk to her, remind her of her past and tell her stories to stimulate her brain.

I pray everyday and every night that this will soon be over and my mom will make a recovery.

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Hi Wendy,
My husband had the same thing happen. I have ordered Dyna Splints for his hands, most hospitals have occupational therapists. Make sure you go to them tell them you want braces to be put on her legs. My husband has his on for 6 hrs. I had nurses give him muscle relaxers so his limbs will not atrophy.
The hands splint are put on every day 2 hrs at a time. They gradually increase over time, comfortable.
Medicare will cover costs although ours did not.
I pay out of pocket. You go to the director of the facility & ask how often they are doing physical therapy with your Mom. If it is a short time , you ask them to increase time. What can you do to have them increase time. I am hiring a massage therapist to come in for him. You get a radio , MP3, Ipod whatever you play it for her I got Al an MP3 at Radio Shack less than 40 bucks. His friend downloaded all his favorite songs. I put it on his ears. I have a TV on in his room. Now with these stupid converter boxes. it shuts off very 4 hrs. I come into room, I put everything on. DVD player with his movies he loved.
I read books to him outloud. You stay on the staff.
Make sure they change the tubes, suction, everything has a date. You want it changed when it says if you see fluid building up. Get the nurses, RT,
Find out exactly what meds she is on. Do not listen to the doctors if they are being negative with you.
She is your Mother you know her better than them.
You tell them I will take whatever GOD gives me.
I massage his feet & hands when I get there daily.
If I notice he is in pain. I tell them to give him something.
My husband sweats alot I bought two fans. Which I keep on at all times. I have also become friendly with staff & other families even residents. I make sure if I have to work he is looked in on.
Pray for her & you just loving her.
God Bless You ! :)

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This was a reply to the gentleman whose Mom posted above mine. Did not get his name.

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Dear WMD (Wendy), My heart goes out to you and your son. You are so right about anoxic brain injuries. They are so different from TBI's. My son, Josh, suffered from a severe anoxic brain injury due to a drug and alcohol overdose. He was in a coma for nearly 2 months and on life support for 5 months. He is home with me now and it is extremely difficult. How is your son now? Does he perseverate like Josh? It is so difficult ... frustrating and maddening. Is your son on any antidepressants to help with seratonin and dopamine? Josh is taking both Lexapro and Cymbalta. I know the Lexapro has helped calm Josh and helps with the perseveration. He just started on the Cymbalta so the jury is out on that.

I will send you a personal email. I support your cause. I am part of it. But I will say I am totally burnt out. I am trying to keep the faith and do the best for Josh. Hyperbaric oxygen has helped him. He has had over 100 treatments. He went from being in a coma to walking, talking, reading, writing, but he has had so much cell death due to lack of oxygen. It is hard to know what to do.

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Dear Keepingfaith909, I am sorry to hear about your mother. I went through the same thing with my son, Josh who suffered from an anoxic injury due to a drug and alcohol overdose. The trach thing is standard. They put in a tach after two weeks to free up the face. My son went through the sweating. It's called a neurological storm. He had severe sweating and heart racing at the same time which was very scary. The hospital champlain was called by his bedside several times as they were thinking "this is it". What a horrible experience. Josh is now walking, talking, reading, writing... He's up and at 'em after nearly two months in a coma. Touching is crucial to recovery! I used to massage my son's hands and feet with essential oils, play music and talk to him constantly. Music is healing. Talk to your mom. Let her know you love her and are there. They can hear you and often times, they understand what you are saying to them. They just can't respond. Give it time. Hyperbaric oxygen therapy helped my son greatly. He had over 100 treatments.

Keep the faith. Hug your mom and tell her you love her! She hears you.

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Dear Keepingfaith909, I am sorry to hear about your mother. I went through the same thing with my son, Josh who suffered from an anoxic injury due to a drug and alcohol overdose. The trach thing is standard. They put in a tach after two weeks to free up the face. My son went through the sweating. It's called a neurological storm. He had severe sweating and heart racing at the same time which was very scary. The hospital champlain was called by his bedside several times as they were thinking "this is it". What a horrible experience. Josh is now walking, talking, reading, writing... He's up and at 'em after nearly two months in a coma. Touching is crucial to recovery! I used to massage my son's hands and feet with essential oils, play music and talk to him constantly. Music is healing. Talk to your mom. Let her know you love her and are there. They can hear you and often times, they understand what you are saying to them. They just can't respond. Give it time. Hyperbaric oxygen therapy helped my son greatly. He had over 100 treatments.

Keep the faith. Hug your mom and tell her you love her! She hears you.

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Wendy, How long was your son without oxygen? In my son's situation, no one knows. He was partying with a bunch of guys who were all screwed up on alcohol and drugs. Josh was DOA when he was taken to UMC in Tucson near UofA. It must have been a long time that he was without oxygen since he was in a coma for nearly two months and has virtually no working memory and perseverates constantly. He'll play xbox for 4 straight hours if you let him. His speech is extremely slurred. His balance is off. It's all so sad!

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Hi Sandra, How is your sister now? It's July 13, 2009. I just joined INSPIRE and I am hoping to get lots of information and support from its members. My son, Josh, had a severe anoxic injury due to a drug and alcohol overdose. He was in a coma for nearly 2 months. Hyperbaric oxygen therapy helped Josh come out of the coma. I took him by ambulance while he was in a coma everyday to get HBOT. He woke up after 10 treatments. The brain is stunned and shocked when it has no oxygen, but all the cells don't die or the person would die. Some of the cells are not dead, but are idling neurons that are jump started by the HBOT. It helped Josh and worked for him. Give it time. Josh spoke his first word shortly after his 10th hbot treatment. He said, "idiot". We joke that he was clearly referring to himself...

Touching and massaging is crucial to healing. I constantly massaged Josh's hands and feet with essential oils while he was in the coma. Tell your sister that you love her and to hurry up and get out of bed! Hope she recovers soon! What a terrible experience to endure!
Paula

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That was an amazing book. Has your husband had any hyperbaric oxygen treatments? Have they helped? My son, Josh, has had over 100 treatments. I stopped for a while since he would get too "wired up" after the treatments. HBOT definitely helped get Josh out of his coma. He went from being a rag doll to walking, talking, reading and writing. I think Dr. H also does consultations.

How is your husband doing? You are a wonderful caregiver and he is lucky to have you.

paula

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Hi Paula,
Unfortunately Cathy passed away on March 2. Complications with the traech (among other things). She seemed to be doing alright although she was beginning to have more "bad" days than good (less awake, less responsive). She died of "aspiration of gastric contents", which basically means that she choked to death.
Not a day goes by that I don't check out this site to hear inspiring stories - I pray for all of you who are going through these difficult times and wish you all the strength to make it through, no matter what the outcome is. I found so much support here that I desperately needed at a time when I needed answers to questions that I was afraid to ask doctors for fear of hearing the worst. They had told us she was a vegetable at first, so you can imagine that any little bit of positive information was welcome and I got that here. At a time when I found it so difficult to go into that hospital room and see my sister in that state, I found comfort and courage through everyone at Team Inspire to do it and for that I could not be more grateful.
So now Cathy is gone from here, but she is in my mind all the time. I have a photo of her on my desk at work and I talk to her all the time. I see her son as much as I can and see her in him. I think of her everytime I hear a song by the Bare Naked Ladies or the Black Eyed Peas and remember how she knew every word! I guess this is what they mean when they say that a person stays with you forever - through memories.
So, although Cathy's story did not end well, I am very hopeful just the same - and I am sending lots of positive energy to you and your family for Josh's full recovery.
Take care - I'll be checking in for updates.
Sandra

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