Brainstem Stroke patient

[sisternlaw]

The following was placed into its own thread - MBM Donna

 

Hello, I am the sister in law of a guy named David, who had a brain stem bleed on the 3rd fo April.

It happened on his way home from work. His car veered off the road into some trees, but he was not

injured in the accident. When he was taken into the hospital by paramedics he was unconscious.

It has been 23 days..and he is still unconscious.

When he was first admitted to the hospital, the doctor told my sister that her husband was hopeless, that

he would never recover, and that she should consider donating his organs.

She was devastated to say the least.

His prognosis was that he would only live a few days...his heart lungs and kidneys would fail, and he

would get pnuemonia ..and die.

They did nothing for him in the ICU...just put him on a respirator and kept him comfortable.

Now, 23 days later he is breathing on his own...has a strong heart beat, is being tube fed and digesting

well. His elimination is great....he is pink..warm...and looks as though he is sleeping.

He was moved out of the ICU and into a regular room with minimal care.

My sister does not know what to expect because the doctor continues to tell her that it is just a matter of

time, and he will die. We did not even know that it is possible to regain consciousness after a brain stem

stroke, until I discovered this blog.

I have read that several people have "come back" from the coma within about 3 months...is this about

normal?....Did you remember anything from when you were in a coma? Could you hear? Understand?ect.

How did you feel when you first came out of it?...I am sure that there are many different severities of

damage that can be suffered from the brain stem bleed....but just to know that people do acutually survive

is so exciting and gives me hope! Please let me know of anything that would be helpful to tell my

sister. Thank you so much!!! Sisternlaw.

[Guest lwisman]

She should definitely ask for a second opinion.

 

I had a brainstam stroke (bleed) 10 years ago. My family was also asked about organ donation. I was only in a coma for two weeks, but gradually improved. Although in 2 weeks the doctors decided I was no longer in the coma, I do remember anything from the first 2 1/2 months. I am told during that time I became more and more responsive. It is like my short term memory was not working. After a few minutes I forgot the conversation.

 

It then took lots of therapy and hard work to fight my way back.

 

The doctor does not know if he will recovery or not. The fact he is still alive and is breathing on his own are very good signs.

 

Ask a lot of questions and seek a lot of answers. Stroke recovery takes a really long time. It is true that 90% of brainstem strokers die in the first month. But, he is still alive and has made it for 23 days. Every day means he is more likely to survive.

 

Keep coming back here and asking questions. There are a number of brainstem stroke survivors on this board.

[Phyllis4732]

I did not habe a brain stem stroke but a bleed a little above - but I am writing to you about something else.

 

TELL YOUR SISTER TO SIGN NOTHING! Doctors can be and havbeen wrong. Tell her to keep the faith and she will (hopefully have the last laugh and can say, "I told you so".)

 

Phyllis

[kanderson]

hi sisternlaw. i agree with phyllis, doctors prepare you for the worst but as you read on this website, people do come out of them. the brain is an amazing organ and can repair itself or find new pathways to heal itself. never give up hope. talk to him all of the time, i truly believe that even in coma they can hear. everyone is different in recovering from a stroke, he has already made it through 23 days. my heart goes out to you during this tough time and i will keep him in my prayers. keep posting here to let us know how he is doing. i wish you all the best.

k.anderson

[dstraugh]

sisternlaw,

 

I too welcome you to this wonderful website. This site and the people have become family. I agree with Phyllis - tell your Sis to sign nothing but not give up hope! There are many of us here who have proven the docs wrong in one way or another.

 

Your family will be in my thoughts and prayers. Please keep us posted. ((((Hugs)))) to all of you.

[bstockman]

Hi and Welcome to the site. I did not have a brain stem stroke, but we have many here who have, inclucing the founder and CEO of this site.

 

Some have been in a coma or unconscious for a few weeks or more, some with "locked in syndrome" Reading the posts in the brainstem stroke forum may be helpful

 

No one can really give you a time line. It depends on damage, and how he heals, but 23 days and breathing on his own are good signs.

 

I also believe people can hear, may not be able to respond, but kind loving words and encouragement. Tell people to not be discouraging within hearing. Dr's and staff also.

 

Your family will be in my thought and prayers also.

[sisternlaw]

[]Thank you so much eveyone. I am so glad I found this site. I just typed in "Brain stem stroke survivors" onto

Google....and this is where it led me. I didn't even know if there was such a thing. According to the doctor,

no one survives an injury of this nature.

I was so excited to find that it is possible to survive....that I called everyone in my family to tell them.

My sister told me that she felt a great relief. She told me that had been so stressed every minute feeling

that David had to wake up now...or he would die. It is strengthening her faith to see him improving daily.

Yesterday David was moved up to the 6th floor of the hospital to nuerology. He has a very nice room where

the family can visit him and where nurses can attend to his needs.

My sister's name is Julie. She was happy to hear about me getting logged into your site.

She told me that she would like to eventually get on herself, but with all the time spent at the hospital,she

will have to wait awhile. In the mean time, I can do it on her behalf.

I forgot to mention that David is 46 years old. He is a big man, and strong. It is speculated that he may

have had trouble with high blood pressure, which could have caused the bleed. He had been feeling pain

in the back of his neck off and on for about a year. However, being an avid golfer, he figured it was just

caused from that. He took a lot of Advil.

 

Julie told me yesterday, that David coughed on his own...coughing up phlegm...without the assistance of

the nurses "making" him bring it up with the hose. She said that it was the first time he had done this.

Also, she said he was moving his toes. He did it over and over. This is also a first.

He had been responding to touching or caressing of the feet...he would sometimes flinch...but he was

doing it yesterday without any stimulus.

These are microsteps...but so exciting.

One thing I was wondering....do any of you know if your eyes were "fixed". David's are.

That is one reason why the doctor kept saying there was no hope.

However, I have been reading that fixed eyes are a symptom of coma. Is this true?

 

I will say though, that the doctor's attitudes are beginning to change. At first they told Julie that

if David got Pneumonia, that they would no treat it, but rather ...let it take it's course and let him die.

Now however, they are giving him antibiotics to keep him healthy. He was tested yesterday, and the

doctor told my sister, that David has no infection at all in his body.

 

We are very hopeful...and we are people of faith. We believe in miracles. It's just that it's been awhile

since we've seen one. We know that God is able, we are just asking for his mercy for David.

Thank you all for your prayers and your support.

I am not on line at my home..so I have to use the computer at work. I work in a high school in Bend Oregon.

My times for responding may have breaks in between because of that...but I will respong every chance

I get. Thank you all again. You are a great blessing! Jocelyn

[kanderson]

hi jocelyn,

there is always hope, never give up on that. i am so happy, david is responding in some ways, keep talking to him and encouraging him. take care of yourselves, during this tough time, i am hopeful that david will pull through this. so stay strong, and post when you can to keep us updated on how he is doing. miracles can and do happen.

my best to your family,

k.anderson

[bstockman]

Hi Jocelyn & Julie, Glad to hear that there is progress. Stroke recovery is very slow.... every new thing is a celebration.

 

Good to hear the Dr's are turning around, and that he is on neurology floor.

 

I know I have read in a couple posts that several brain stem stroke survivors could only blink at first... you may want to look up "locked in syndrome" there are several articles and posts here on that also.

 

This will be a long bumpy road, but know you and your family are not alone. Come back when you can, we have virtual shoulders to lean on, give great virtual (((((((((HUGS)))))))))) and are terriffic cheerleaders.

 

Warmest wishes and prayers to you all.

 

[dstraugh]

Jocelyn and Julie,

 

Thank you for the update on David. I am also glad to hear the docs are having a change in attitude and that David is showing signs of daily progress. Yes, the recovery road is bumpy - it even has potholes and plenty of speed bumps. As Bonnie said we're available for virtual (((hugs))). You guys are not alone in this journey. If you have not yet read our CEO's bio, here is a link for you:

http://www.strokeboard.net/index.php?act=m...ry&cmd=si&img=3

 

Faith and patience are key ingredients in the recovery process. Remember too that you and Julie need to care for yourselves. You will be of no good to yourselves or David if you are not healthy(mentally as well as physically).

[LaurieS]

Hi Jocelyn - Not sure if you've read any of my posts or not but my Dad (64 yrs old) suffered a stroke in his brainstem (which further extended a few days later), in the left side of his brain and in his vision center. He also suffered a bleed which they were able to stop. This happened in Feb of this year. We were told he would not recover and had him in Palliative Care at one point. He has had pnuemonia twice. He is only able to move the right side of his body and open his left eye. He cannot talk. It has now been almost 3 months and Dad is still with us. He has made very slow progress. He is now periodically waving at visitors when they leave, which is a huge step for him.

 

My message to you is - no matter how hard it is to go through this - don't ever give up on him. Everyone on here is right - recovery is so painfully slow and you have to take each hour and day at a time. You and your sister are not alone - there are many of us going through similar situations. Just hang in there!!!!!

[sisternlaw]

Thanks to all of you again today...your words are greatly appreciated.

Jocelyn

[Guest veggie.vampire]

Mine was a brainstem stroke by clot not bleed a bit over 2 years ago. I was unconscious for several days, during which I have no memories but I understand a day of it was on life support. Doctors don't know it all, they prepared my family for a funeral and assumed I was unconscious, and said I'd recover no more movement. However I could hear them after a few days, but only blink and couldn't make a sound. One side now moves about normally, they were wrong, very wrong. Assume he can hear, reassure him etc, and all the time there's life there's hope. There are some good signs there, very exciting. Good luck.

[fking]

Jocelyn,

 

Just another Welcome to the site with hopes all will be better as time goes by. Stay tuned!

[mikisteph]

Hi Jocelyn,

 

I had a brainstem bleed whilst working in Kuwait over 4 years ago and was unconsiouis for a number of days, fortunately i had an Egyptian doctor who was of the opinion that if I was alive he was going to do all he could to keep me alive. 4 years on it is a constant fight but slowly we are getting there.

 

All the best for the future

 

Mike

[jwatrous]

I would definitely get a 2nd opinion as it seems his doctor is stuck using his first diagnosis to treat him. Not being a doctor, I cannot give you factual info on a brain stem stroke, but we are all going to die - even the doctor and taking a defeatist attitude is not in his best interest -

Miracles and progress do happen, so please do not give up on him -

P.S. Don't give anything away or plan his funeral - plan for rehab & the day he comes home

June :big_grin: :cheer:

[bren1993]

Hi

 

My Dad had what we are told was a very severe brainstem stroke, We were told he wouldn't make it, this all happened Nov 2006. My Dad who is now 68, was strong man. He had a heart attack drove himslef to the hospital, underwent triple bypass, somtime during surgery the stroke happened. My Dad was in a coma for 42 days. It was the hardest and scariest thing my Mom and I have ever gone thru. My Dad was moved to a nursing home rehabilation center. When my Dad woke up from the coma, we were all so happy. However, its has been such a slow road as far as recovery goes. He did end up back in ICU for a week with a very serious infection. But, he did recover and was sent back to nursing home. He still has a trach and feeding tube, but 5 months later we are trying to have the trach removed. let me tell you what my Dad has accomplished-----

 

My dad can move his upper body, lower body is still not responding. He wakes up everyday and has 2 hours of physical therapy, he is strong enough to be in a regular wheel chair, he can toss a ball, he has mumbled words, and spoken slightly. The things he says make sense. He watches people, and is making progess everyday.

 

When my dad first woke he sleep alot, he may only been awake for a couple of minutes at a time. But it has increased, on a good day now, he may be awake for hours at a time. The brain needs alot of rest to heal, your brother in law is alot younger than my Dad. Please let your sister know, it sounds like he is fighting to stay with her, I do think talking to him makes a big difference. My Mom was very dependent on my Dad, I think my Dad is fighting to come back to her.

 

The Doctors hadn't given us much hope, but my Dad is showing them, miracles do happen. I do not know how this will all end up, I want my Dad back, I want him to talk to me, I have come to accept it will not happen quickly, I have to be patient, the brain is amazing, it heals slowly.

 

Please let your sister know that there are others like your brother in law, and they are recovering!!!!!!

 

God Bless

 

Bren1993

[lorrainelm]

 

 

HI,

I EXPERIENCED A BRAIN STEM STROKE,Dec 1,2004.I was not unconscious,but had physical deficits which have regenerated.I have neuro deficits which are minor involving short term memory,attention and concentration.

I am also a nurse and have seen and cared for many brain stem stroke patients.

No stroke is comparable to another,but many recover well and recovery does not end as Drs may tell you.

For someone in nonresponsive state it is important to know that hearing is last sense that leave a person

and he may very well be able to hear everything you say,but not be able to respond.

I would suggest earphones and a walkman or CD player or mp3. Try and stimulate hime with one

for short periods to start. Try some music he liked prior to stroke or stories or voices you may have recorded.

Most of all tell y sister to never give up HOPE.

Change does happen,despite what DRs suggest.

Miracles also HAPPEN.

Take Care

lorrainelm

email me anytime y like in regard to brainstemstroke and his condition

[Guest thegoodlife]

:Clap-Hands:

 

Hi and welcome!

 

 

It sounds like you are doing all the right things and David is slowly but surely coming around :friends:

 

Just to give you some hope from my front, I am a brain stem stroke survivor who truly amazed many Dr.s I was not s'pposed to live either. Re-learned how to walk,talk,eat,speak,see, etc. My stroke is 6 yrs old now. My brother had multiple strokes,,pnuemonia,menigitis, he was litterly on deaths door for over two mos. His stroke is now 12 yrs ago. He was 50 I was 48 when ours occurred.

 

We both walk talk and act stupid lol lol! Every stroke is different but lots of us have come around and can still be fun and stupid! HA! HA!

Humor helps tremendously!

 

Faith plays a big part and good support and lots of determination is all

it takes.

 

thegoodlife

Nancy

[Miss D]

Hi Jocelyn!

 

First of all, let me start by saying "welcome"! Glad you found this wonderful site!

 

When I first had my brainstem stroke (clot), doctors didn't hold much hope for me either. At that time, they told my Mom if I could make it through the first 2 weeks, then I would have a fighting chance! Also, doctors told family and friends to talk to me as though i heard every word. Some things i remember. Others are "fuzzy". I do believe it played a part in helping me to hang on.

 

As said before, as long as there's breath, there's hope. David, you, and the rest of your family are in my prayers.

[sisternlaw]

Hi ...sisternlaw (jocelyn) here.

My sister Julie has asked me if I would inquire as to whether or not anyone knows if the "fixed eye"

is an indication of anything....is it just part of being in a comatose state? Or is it more serious?

David has those fixed eyes. It is very disturbing to her. Can a person become conscious again after

having the eyes in that condition?......I read that it means the brain stem is not functioning...

However..other things that are controlled by the brain stem have been working.

Do people with fixed eyes recover from the comotose state?

[Guest lwisman]

Lorraine's idea of music is a good one. There is music composed for healing. Here is one site where you can click streaming audio to listen:

http://www.innerpeacemusic.com/sound_healing.html

 

[kanderson]

hi again jocelyn, i would suggest sending a PM to lorraine, since she is a nurse and has more experience with the fixed eyes issue. i feel she would have the answers you seek. i am so glad that david is still doing well. i still have all of you in my prayers. also the music is a great idea.

k. anderson

 

 

[dstraugh]

Hi Jocelyn,

 

It is definitely one-day-at-a-time. Yes, either pm Lorraine or under Members area, click on ask an expert.

 

My continued thoughts and prayers are with all of you.

[Jen B]

Hi Jocelyn,

I'm not sure about the fixed eye issue that you are talking about. My husband (38 at the time) had a brainstem stroke (clot) in August 2006. His eyes don't move "out" - only up, down and in. This has gotten better - after his stroke they would only move up and down. Tell your sister to hang in there (and the rest of your family). Like everyone else has said, he's definitely making progress. From what we've seen in 9 months, recovery is very very slow. My husband's clot was big (I saw the pics from the angiogram). They also gave me the worst news but he lived and we are home now. Keep the faith, stay strong and I would suggest talking to him. My husband was only in a coma for 15 hours but I talked to him and he says he heard me. I've heard that it's like being asleep but being able to hear. I would suggest telling him what happened, to keep fighting and that he's getting better. All the doctors can go on is what is in text books - every single case is different.

 

Stay strong and be positive - it will get better

Jen B