My husband's condition after the bleed

My husband had a bleed last May 28, 2012 while he was resting in our house, he was already unconscious when we arrive at the hospital. during this time we still don't have any idea that it's AVM. They are considering AVM or Aneurysm during this time.

On the ER a CT scan was ordered and the results revealed that there was subarachnoid hemorrhage with intraventricular components and signs of beginning hydrocephalus so an emergency external ventricular drain insertion was done that same day. It was removed last June 6 then a CT Angiogram was done and that when they found out about his AVM. He stayed at ICU for more than a week.

After that an MRI was done, and a Stereotactic Radio Surgery was done last June 20, he was discharged from the hospital last June 26.

Our problem right now is that he is acting like a child, he lost most of his memory, is that really normal? will he still get back to his normal self.

Welcome.

Hard to say about the memory. Is he on any anti-seizure meds? They can affect behavior.

best wishes,
Ron, KS

I'm in the same boat, the difference is that you care deeply for your husband, it does count and once he recovers he'll be in your debt forever :o)

I had a stroke and it took me many months to cognitively be myself again. Everybody is different, but if one thing is for certain is that recovery DOES occur to an extent. For EVERYBODY! His stroke was only a month ago, he has a looooong way to go as far as his recovery goes. Best thing you can do now is to be patient and show him love and support.

That is very important for us brain injury patients…a lot of patience, understanding and support.

I understand your frustration and your concern. It takes a long time to recover from a bleed. Progress is sometimes slow. Like the others have said, the best thing you can do for him is to be patient and continue supporting him. He will improve. To what extent it's impossible to say. Is he receiving any type of physical, speech, or occupational therapy?

Even though his speech is good you might look into speech therapy. My daughter's speech therapy has not only helped with her speech but has also helped with her memory and understanding things. It might be something to ask his dr. about. I think her speech therapy has really helped with her memory problems. As everyone else said it takes time for the brain to heal. Our dr. told us it was a marathon and not a sprint when talking about her recovery. Prayers going up for all of you.

Every one is different in the amount of time it takes to recover from a brain injury. I couldn’t use a cell phone, TV remote control, or a computer either. It may help if you read the book “My stroke of insight: A brain Scientist…” by Jill Bolte Taylor. It is very inspiring and I listened to it on my kindle when I was too tired to read. I had to learn how to use my kindle again. The best thing for brain trauma is rest. I wasn’t sleeping either when I got home from the hospital but after a week, I slept a lot. You should mention it to his Doctor. I will pray that your husband makes a complete recovery.

My husband had his bleed in feb of this year. We were in the hospital 52 days, 30 of that in rehab. Id say the first 20 days after surgery he stayed up all night in a manic state. He would talk at a speedy pace for 6-8 hours straight at night. This finally subsided before we came home but it was an exhausting few weeks.

Hi Heavensent. Please take a deep breath…you are in it for the long run. Most brain injuries heal SLOWLY. Not months but in some instances years. Can it happen…yes sometimes. There was an actress in the 1960s Patricia Neal she suffered 3 massive strokes while being pregnant. She learned to talk and walk again and won an Oscar for her performance in The Subject Was Roses just 3 years later!
As far as not sleeping I have friend who was dragged underneath a car by a drunk driver for 2 miles. She survived but her neurologists believed it rewired her brain. She sleeps very little. If I were you I would review all the meds he is taking with his doctor. If things get too rough see if you can find a good psychologist who specializes in brain injuries. You will be in my prayers!

If you have a computer you can google Jill Bolte Taylor utube video. She gives talks now about her brain bleed and stroke. She couldn’t even understand speech. She had to re-learn the alphabet. Now she gives lectures on the brain and her stroke. In the back of the book, she gives tips on things to do to help brain injury patients. She was a nuero-something. She knew she was having a stroke but she was so fascinated by the symptoms that she didn’t call for help right away. I found it really interesting.

A few weeks or even months is no time at all in brain-recovery time! There's a long way to go, and that's GOOD news. Doctors used to say that patients' brains would heal for two years after an injury or a surgery; now they think it's more like 10 years. Most of the big things will happen in the first year or two, but people who keep working on their deficits can improve even after that. At this point, your husband is probably still having swelling, which causes some temporary problems. My husband was in a coma for weeks after his bleed and surgery, and he spent 6 months living in a rehab facility; after that, he went to college, earned an MA, and is now finishing his PhD. He has lasting problems, and I have to badger him to work on the ones that he can work on, but he came a long way after a devastating bleed.

Lobby hard to get as much care, of as many different kinds, as you can. Ask the doctors as many questions as you have. There are a lot of specialists who take care of very specific areas of brain recovery; for instance, a neuropsychologist can do an assessment at some point to see where your husband's weak areas are, and help him work on those.

It's too early to even imagine the future; try not to worry about your worst fears, and try just to focus on what needs to be done right now.

it has now been five months since my husbands bleed and he still has some strange neuro issues. Sometimes he is very mean having no filter. I find myself arguing with him and then realize this will do no good. He is now convinced the government is out to get us and we will soon implode into a race war. I try to avoid these conversations however they come up often. It is difficult to watch the news around him as it may spark something. we will also be talking and he will say something completely unrelated. This has improved dramatically but still very hard to deal with.

It must be so difficult for you to care for your husband and wonder if he will have a full recovery. A month is really early when you are talking about a brain injury. I still wasn’t in my right mind(so to speak) a month after my embolisation. It takes time. Has your husband shown any improvements in the past month? Please take some time for yourself. Its important to take care of you so you can take care of Him. I’ll continue to pray for you and your husband. Please keep us posted as to his progress.

Good luck to your family,

I know it is hard and stressful but recovery does take time and every case is unique, that is why it gets so frustrating not to get answers from doctors or when it seems nobody else has been through the same situation.

Keep faith and best of luck.

Hi i really feel for all your family, my husband had a massive bleed and stroke aged 37 last Sept 2011, unknown to anyone he has an AVM left side of his brainstem, he was in a coma for 10 days, ICU for 3 weeks, neuro ward for 7 weeks and rehab for 6 months. My husband had to relearn to do absolutely everything again, he has short term memory loss, cognitive, balance, sight and alot more problems but he is still with us, thank God. I have never left his side for even a day, i brought him home 2 months into his rehab as i felt he would get better quicker being around familiar things and his family and he has improved massively. He can now walk unaided around our house, outside someone has to be by his side as his balance is bad, i have sat with him for hours reminding him how to do things again e.g wash, brush his teeth, dress, write, read, spell, count and he can do it all now. I used a white board in our room and wrote the date and year on every day and put instructions up on the wall of what he had to do every day, i also gave him a note book and he ticked off things which he had done through out the day, he truelly is our miracle. He had gamma knife at Sheffield on June 27th hopefully this will get rid of the AVM forever. The healing process is very slow with ups and downs along the way but with your patience, support and love he will get stronger every day. I pray your husband will make a full recovery.

Please be patient Heavensent, this is a really really confusing and stressful time for all involved, especially as we just dont know what to expect, no one knows the outcome, not even the doctors, they told us my husband was still dying 2 weeks after his bleed, they told me i must consider turning his machines off as he would (their words) be a vegetable all his life, if he ever did wake up, he would be severely disabled (this is written in his hospital) records blah, blah, blah, i never ever gave up hope, the confusion which can last weeks or months is terrible, this has got much better for my husband and he is mainly only confused when he wakes up now, but he did get the rooms in our house mixed up also and he would talk about irrelevant things, and sometimes i couldnt work out what he was talking about at all, he would wake up at all hours and try to get out of the bed then another night he made me look in the garden for something that he said was there, this was happening at all hours throughout most nights, i was wornout but believe me, things do settle down and get better, incontence was also a massive problem as he had bladder and bowel damage but this also has improved massively and is no longer a problem. Like i have said, the healing process is really a slow one, and patience and understanding is the most important thing for family and friends to have, God bless

It's so hard to say how long it will take for your husband to recover from all he has been thru yet pleaes know that, with time, and with all of the love and support he has all around him with you, he will get back TO being his normal self! However, I will share with you that after surviving my subarachnoid hemorrhage in February, 2011, as a result of my AVM, I now have a new "normal-self" :)! I am now AMV-FREE yet this experience has changed me in so many good ways; so many blessings were brought into my life and I now have such a different perspective on life which is GREAT! Please continue to be the Loving and supportive wife you have been - that's exactly what your husband needs thru this recovery of his!

Peace be with you thru this!
Michele

My bleed/surgery were 3 years ago' my husband/of 15 years made it 2 years, before he filed for divorce. "You are Not the woman I married! AND 'I deserve the right to meet someone healthy to share my life with." Were among the motivational comments he left me with!! Hence the butterfly logo representing us AVM Survivors! I AM recovering to a new and brilliant me! I will never again be the girl he married, she had a Congenital birth Defect-- I don't! BUT I ROCK!!!!
cheers,
Nicole
all things are possible for he who believes.