I don't have a whole lot of answers for you. I do want you tell you that there is others out there that have suffered and are still suffering like you. My boyfriend had a hemorrhagic stroke on March 19th, thankfully I was with him when it happened so we were able to get to the hospital quickly. I don't know what is going to happen to your sister but I do know that I can give you some hope. My boyfriend two months after the stroke has gone back to work he still has partial blindness but slowly he is coming back to himself. This is a blessing because all I read most people that have this type of stroke do not fair so well. So what I can tell you Barbara you have to have faith that all will be as it should, you are not alone, and therse are miracles out there. If you should need someone to talk to, to yell at, or just to feel normal around you can email me at ***@****. I hope all goes well and I will keep you in my prayers.
On June 4th, in the evening, my beautiful mother had a subcerebral hemorraghic stroke on the right side of her brain. She is only 66. The doctors said it was a large bleed, 4 x 5 centimeters. They gave her five days to live. It has been two weeks and she is still fighting for her life. She has a feeding tube and a tracheotomy. She is slowly being taken of the the respirator. The strangest part of her condition is that she keeps opening her eyes and blinking but it's a blank stare and she doesn't seem to be there. Sometime when I walk into her room and say hi Mom I'm here, she opens her eyes but has no expression. The last couple of days she has started to yawn and make faces when I put ointment on her lips. She doesn't like it when I touch her lips. I have been rubbing her down with moisturizer everyday. The last two days when I rubbed it on her knees and thigh areas she started shakinng her leg like I was tickling her. What does this mean? I am having a difficult time dealiing with this unknown and unpredictable recovery process. The doctors keep giving me the worse case scenario but I see things happening which they don't really explain to me. Has anyone had this sort of experience?
I forgot to mention...Surgery was not performed and no shunt was used. The neurosurgeon said my mom was not a good candidate because her bleed was deep in the brain. She would not have survived the surgery.
sorry to hear about yor mom. y mother had a massive hemmoraghic stroke nine months ago. They did a "Brain Bleed" which drained the fluid/blood surrounding her brain and pusing it against her skull. A few days after the brain bleed, she could talk and say a ferw words, follow commands, and I could tell from the look in her eyes that she was still there. somedays she has a blank stre buit My sister and I just keep leeting her know we are there and she cpmes back. You know a stroke on nthe forehead, a squueze of the ahnd goes a long way. She is currently at KAIser and we have fought tooth and nail to get her some type of therapy. We are still fighting.
Thanks for sharing your story. My mom woke up four days ago. She is breathing on her own. She is responding to commands and totally knows who I am and all of friends. She is shaking her head yes and no when we ask her questions. I am very happy that she is awake and her personality is entact. She only has use of her right hand at this poing. Does anybody have a story about a loved one who has regained use of more parts of thier body?
Simply - NEVER GIVE UP! The human body is amazing. 15 months ago my wife (53 years old) had a hemorrhagic stroke on the right side. She was not expected to live the day. They placed 13 platinum coils in the aneurysm (16mm x 20mm). Then, she was not expected to live the week. At first, she was totally paralized and on a ventilator. She was blind on her left side, both eyes. Today, the doctors are amazed at her recovery. She walks, talks and goes to work everyday. She even drives although I still need to be in the car with her. Even her doctor said that if he didn't know she had a stroke, he would never be able to tell she had one today. Her biggest complaint is that she feels "dumb". She complains she's not as sharp as she was before. What I've noticed is that stroke patients seem to lack self motivation. That's where you come in. Keep after the patient everyday. Keep them active and keep on challenging their stroke induced deficiencies. Their diet is now extremely important. High in protien. More sleep is important too, I think. She can sleep 12 hours a day now. Just remember, NEVER GIVE UP! It's gonna take lots of time. Keep on get'en it!
Thank you so much for telling me about your wife. She sounds like a fighter who won a very difficult battle. I stop by the hospital several times everyday. I tell my mom not to give up and to fight I encourage her to try to move something everyday even if its just a little bit. I tell her that I am going to help her with everything and together we will win. Thanks again for the very encouraging story.
I greatly appreciate your stories of recovery after hemorrhagic stroke. My 81-year-old husband had this type of stroke on 7/3. It was a rather large bleed in the back right portion of his brain. Many of your experiences sound exactly like mine. He is on a ventilator and feeding tube, although he has been breathing for up to 10 hours without the vent. He has just begun opening his eyes and blinking them, and also lifting his right arm a bit. I see a little more "life" in his eyes than I did a few days ago, but no sign of recognition. The doctors tell me he has good reflexive reaction in all four of his limbs. All of his vital signs are excellent, and I think he can hear, because he seems to calm down when I play his favorite classical music through headphones on his ears. No one can tell me what his long-term prognosis might be, or even when or if he will wake up and recognize me. I just keep touching him and talking to him. Some people tell me just to pull the tubes and let him go in peace, but it is so hard to know what to do. Especially after reading some of your comments about it taking 3-4 weeks to regain consciousness, I feel like I need to give him time to fight back if he wants to. Anyone have any advice for me?
I'm so sorry to hear about your husband. I know how you feel and what you are experiencing right now. After my moms stroke the Doctors and others encouraged me to withdraw care and let her go in peace. There was one young doctor who told me to give her a chance. I thought about what she would want to do and decided that she would not want to give up so easily. She would want to exhaust all of her options before giving up, so I kept up the fight with her.
Its been six weeks and she is completely awake, alert, and responding to commands and anwering questions by shaking her head yes/no. Although she is still in serious condition, she seems to be doing well. She is breathing on her own but still on the feeding tube.
She just moved to a continuing care facility and has started occupational, speech, and physical therapy. She has swallowed several times on command and mouths words because she cannot talk yet. She is still on the Trachotomy.
She can move her right arm and leg but is not able to move her left side at all. She is even smiling although its very difficult at this point. Her therapists are saying she will need at least six months to regain more use of her body.
Don't give up hope. Stick close to your husband and encourage him. He can difinitely hear you! Also, make sure he is being turned from side to side every two hours so he does not develope any bed sores.
I found out that my mom had a basil ganglia stroke. It sounds similar to your husbands.
Best wishes for your husband and you.
Thanks "tommahwk" for the encouragement. My husband has been moved out of intensive care into a long-term acute care facility three floors down. He is now up to 14-16 hours breathing on his own, and he is moving his right arm quite a bit, especially when I talk to him. The medical people say the movement is "not purposeful," but I think there is more purpose than they understand. He is moving his eyes from side to side, and seems to stare at me intently and furrow his brow, like he is puzzled. Sometimes I think he focuses on me, but other times he seems to have a blank stare. His best friends came to see him today, and they said they thought he recognized them. He moved his legs and his right arm and kept blinking his eyes when they talked to him. His new case manager says they will not even begin to think about what is next for him for 15-20 days, waiting to see if he can breathe round-the-clock on his own and if he regains more consciousness. Knowing how long it took your mother to wake up helps to give me hope. Thank you again!
Hi Sailorswife!! This is such great news and it sounds so familiar. Its almost exactly the same way my mom's recovery went. I would not listen to what the nurses and doctors say about movement. Your husband is probably trying to get comfortable or is moving his arm to find your hand so he can hold it. I am really happy for you!
My mom had the same blank stare and blinking. My theory is, at that stage of the recovery, your husband (and my mom) are not in control of thier vision. He is trying to focus and look at you but the brain is still recovering so his eyes are not working. Slowly but surely they will start to work.
My mom took several weeks to get her sight back and today it is still limited. She can see much much better on her right side and has limited peripheral vision on her left.
Hang in there and just make sure you husband is being turned from side to side in the bed, make sure his skin is moisturized and he is getting good nutrition and hydration.
Yesterday my mom talked for the first time in two months!! She sounds kind of looney but it was so exciting to hear her call my name. She has aphasia so what she wants to say doesn't come out exactly the way it should but she should improve over time.
The speech therapist is working with her everyday and she has a special valve on her trach which allows her to talk.
She is also being moved downstairs one level for the next phase of therapies which will be more intense.
Keep me posted. Don't give up hope. He will breathe on his own. It just takes time.
Keep talking to him and encouraging him. I talk to my Mom everyday and tell her how strong she is and how wonderful she is. I tell her my refrigerator is empty and I want her to cook me some good food when she gets out of the hospital.
I am really happy that your husband is doing well!!
Dear tommahwk ~ Two pieces of good news today about my husband. The pulmonary specialist says he is sure Rick can be weaned off the ventilator, because he is doing so well when allowed to breathe on his own. He still has not responded to verbal commands or nodded his head, the way you say your mom did, but he is moving his right arm and both of his legs much more actively. Today, he was looking right at me, so I puckered up my lips and made a kissing motion. Almost immediately, he puckered up his lips and did the same thing. I did it four times, just to make sure it wasn't involuntary on his part. Each time, he responded with a kiss. Made my day!!! I guess he can understand the visual cues, even if the verbal requests to do things don't make sense to him yet. Isn't it amazing the way the human mind works? We can build every weapon known to man, but have very little understanding of what goes on inside our heads.
The news about your mom sounds very encouraging, too. I'm glad she is able to talk some. It must be very frustrating to be trapped inside yourself with very little way to communicate. How is she doing on movement? It sounds like you have her in a very good facility. She'll be cooking your dinner before you know it. Best wishes!
Dear Sailors Wife, That is very encouraging. It sounds like your husband is on his way to recovery. Everybody I have spoken to said, if your loved one can begin to breath on thier own, they will have a better chance for recovery, so this is good news for you. My mom didn't really respond to anything for at least two weeks and only puckered her lips to give a kiss about two weeks ago. So I think you are right, he is in there. I am really excited that your husband is moving both of his legs and right arm! My mom only moves her right side and has not been able to move her left side at all. Her motor skills on the right side are very poor. I am hoping that her motor skills will improve after more therapy and hopefully she will regain some movement on the left side.
Last week my mom started eating creame of wheat and every few days they will give her different types of food and test her ability to swallow. So far she is doing well. She is also breathing completely on her own and her trach has been capped. It has been two long months, and she is not giving up. My next step is to get her outside in the Sunshine and fresh air.
She is at a very good facility. After she left the main hospital, I had her moved to a continung care facility very close to me but quickly realized that they were not very good. She stayed there four days and I had her moved to a different facility one hour from me and she has been recieving excellent care. Its a long drive but I have piece of mind. I still try to see her everyday.
My mom is suffering from aphasia so she sounds a little crazy still but most of the things she talks about make sense. Her short term memory is not good and some of her long term memory is gone for now. She is more alert and makes more sense in the mornings and early afternoons. She seems to lose it in the evenings when she is tired.
The human body/mind is amazing. Brain injuries are a deep mystery. I wish the doctors had more answers and cures. I hope your husband continues to improve and can go to a continuing care facility soon. Hang in there!!
Dear tommahwk ~ I'm glad your mom is getting good care. That will be my next step ~ finding a place for my husband that will treat him well and help him keep improving. He continues to astonish all the doctors and nurses who told me he would never improve. He is completely off the breathing machine and has a plug in his trach, so he can talk to me. His speech is about 80% clear, and I am amazed at how much high-level thinking he can do. He watches the news and asks questions about it. He jokes with the nurses. Yesterday, he said to me, "Could you please ask someone in authority if I can have some Tylenol? I have a slight ache in the back of my head." No one thought he would ever be able to construct a sentence like that. He can even spell. He wanted to comb his hair with a "decent length comb." I couldn't understand the word "length," so he said, "L-E-N-G-T-H. Length." Incredible! I hope everyone who visits this site after their loved one has had a hemorrhagic stroke will be encouraged by the experiences of my husband and your mother. With enough tender, loving care and a bit of prayer, surprising things can happen. For four weeks, my husband was nearly in a coma. Today, he was combing his own hair. There is still much work to be done. He needs lots of therapy to control the movements in his arms and legs, and he still needs to work on swallowing ~ but he is in good spirits and enjoying life. I especially want to thank you, tommahwk, for your optimism and encouragement. Your words made some very dark days a little easier for me, and you are part of the reason my husband is still alive. You (and one optimistic neurosurgeon) helped me to believe that he could recover. Thank you!
How is your mother doing? Has she gotten any movement back in her left side? My dad had a similar stroke and is regaining a littlemovement in his left side.
Thanks for sharing your stories. I also want to share mine.
My mother 70 years old got hamorraghic stroke on June 23, 2006, about 20cc bleeding. Everything seemed to be hopeless at that time. She lives in a small town, with very limited medical service, in an under developed country. Her condition was not fit for travel to other city. Looking at the CT Scan & her age, the doctor said that she wouldn't survive in 10 days. Her conditions became more stable after 1 month.
And today, in 2 months, she can speak (like wisper). She remembers name of days, she can count, she can communicate, make joke, & laugh. The progress is amazing. It must be miracle.
Next Sunday, we will take her to other city, where her children can give her more attention. By the way, we don't live in the same city.
She still needs time to recover her right body & her ability to eat. She uses feeding tube now.
I wish my story can give you encouragement. And I really wish I would be back to share more good story about my mother later.
Keep in faith, miracle does happen.
My sister, who is only 48, suffered a major Hemorrhagic Stroke on August 12th (A little more than 2 weeks ago). At that time,she was responsive and could wiggle her toes, squeeze our hands and even talk a little. Over the first week, the bleeding stopped, but the swelling didn't go down and it appeared she got worse. She got pneumonia and had to have brain surgery to remove the clot. She is out of CCU (in a regular room now), but she is on a feeding tube and has had a trach tube (to help her breathe). She is breathing for the most part on her own. She hasn't opened her eyes since the surgery and she is finally starting to wiggle her toes and she does squeeze my hand a bit. The hospital won't start any physical therapy until she opens her eyes.
We are all experiencing great highs and lows because every doctor tells us something different. We are told she isn't in a coma, but she also isn't responsive to them. It's really tough to know what to believe. She scratches her nose and wiggles around in her bed, but we don't know what sort of mental state that implies as she really can't communicate. Plus most of the time she appears to be asleep. They are going to do some sort of brain tests this week to check out the brain activity.
Did any of your family members experience the same thing? We know this is going to just take time, but the doctor's seem to be dissapointed she hasn't come around yet (even though it's only 2 weeks). I'm pleased with the baby steps she makes every day, and I'm beyond clueless what the doctors are looking for. Any insight would be GREATLY appreciated.
My 52 year old boyfriend suffered a basal ganglia stroke a week ago today. His bleed is 8 centimeters. He has not yet responded to anything or opened his eyes. This forum gives me hope for him. He is a very strong man and I think he may be able to recover. Only time will tell. His children say that he would not want to live in a nursing home, partially paralized, not being himself. I am afraid they are going to have the ventilator removed. I think it is too soon to make that decision--I want him to have a chance. This situation is so hard on the family. I love his children and his whole family. They have been very good to me. We are all exhausted.
I had a hemmoraghic stroke in February of 2005. I am amazed at how different everyone's experiences have been. They called me miracle girl in the ICU and after 10 days in acute rehab I was able to walk out without a cane. I was 41 at the time and I attribute my recovery to my faith and great family support. I would have laid there and died if I did not have people encouraging me to get better. Learning to make pancakes again for my 6 year old was the biggest milestone. Physical therapy was started on me immediately. I was fortunate to have a stroke specialists at the hospital that I was life flighted to. She went around to other hospitals and taught them how to handle stroke patients. Keep encouraging your loved ones. Let them know how much they are needed. Watch for depression. And get them a great physical therapist. That's my advice. Best of luck to you all.
My sister went to an accute care facility yesterday (from the hospital). We were always told the goal at the hospital was just to get her out of the ccu. Now she is in a facility that specializes in stroke rehab, etc. They are going to give her some tests in regard to swallowing, etc. Every day she responds a bit more. When we told her an old boyfried was coming to visit, she opened her eyes wide : ) It's still really hard, hurry up and wait for test results, etc, the ups and downs emotionally. The hardest part is when people come to see her. I'm not sure what they expect, tap dancing? One woman had the nerve to tell us that she was praying for God to take her (my sister) home. It hasn't even been 3 weeks yet! The body is a mysterious, complicated miracle. We are all so pleased at the progress she has made so far!! It is important to have faith; to keep hope. Of course we all understand and accept the various possible outcomes. But we would really be selling ourselves (and her!!) short if we didn't encourage her and give her a chance!
WindyWendy - Thanks for the encouragement! This is the stuff we need to keep hearing!
Pandorasue - keep the faith and KEEP talking to him. Hold his hand, stroke his forhead. It's way to early in the game to know what is going on inside that noggin. I know it's really hard, but keep letting him know you love him and touch him, kiss him, talk to him. Let him know you are there! The doctors keep telling us that her family always seem to get the best response from her. Again, it seems to me it's way too soon in the game to make any sort of decisions.
Thank you all. I want to give him a chance, but we are not married. I have no say in what his family decides to do. I think he will get better, but his family is listening to the doctors and nurses. It's ONLY BEEN A WEEK. I leave work and drive 130 miles round trip every day to see him for two 15 minute sessions. I wish I could be with him all the time, but unfortunately, I have to keep my job. I have not lost hope, but his family has.
Is there anyway you could get them to take a gander at this post?
Another fantastic resource is the American Stroke Association's Warm Line at 1-888-4-STROKE (478-7653). We called them because we got the same sort of thing from the doctors.
My guess is very few doctors have had loved ones that have gone thru this so they only look at the clinical aspect of things and they are incredibly negative to boot. Add to this people always go by what they see on tv. TV shows only show 2 outcomes in strokes. Either the person dies or they jump up and tap dance around the room. They NEVER show the reality of things, the emotions or complications of things. Maybe you can call the warmline to get some ideas for yourself and the family. The warmline guys have either been thru it or have close family members that have.
The initial hospital my sister went to was horrible! They gave us little or no encouragement or hope. Now that she is in an Acute care facility, well, it's like night and day. The care is different, the encouragement and treatment she is receiving is different. I know she has a long ways to go, but she can squeeze our hands, she is slowly opening her eyes, she nods her head, wiggles her toes, etc.
Maybe you could print off some of these posts to show to the family to give them some hope and perspective as well. One week isn't enough time by any means. His body has gone thru a major shock and of course it's going to take a while to figure out what's really going on in there. In the scheme of things, it's worth giving him the extra time and encouragement. There is nothing to lose and everything to gain.
My thoughts and prayers are totally with you, your sweetie and the family. I totally understand what a hard time this is and again, maybe if you print out some of these posts and call that helpline, they might be able to give you some tools to work with : )
Pandorasue ~ I understand that you love your boyfriend's children, and this would be an awful time for disagreement among those who love him. BUT....if gentle persuasion doesn't work with his family, and it becomes a matter of life or death for him, have you considered seeing a lawyer and trying to obtain an emergency injunction to prevent the removal of life support? Remember that girl in Florida? Even if you could get a hearing, it could delay any action for awhile and buy your boyfriend some time. Fifty-two is way too young to give up on him so soon. He has lots more strength and resilience than someone like my 81-year-old husband. If my husband could make it, there's a good chance your boyfriend can too. How long have the two of you been together? Long enough to be considered de facto married in the eyes of the law? Perhaps you have more "standing" to say what happens to him than you think. At the very least, you should make sure an EEG is done, to see how much brain activity your boyfriend has. I'm not sure it is legal to withdraw care from someone whose brain is still functioning.
As to the wishes of his children, of course young people are going to think life isn't worth living partially paralyzed. When they are older, they may view life differently. You might be interested to know that I told my husband about the choices I made to keep him alive. I asked him if I did the right thing. Was he glad he was alive, even though not everything was moving and working right? He said, "Yes, I am. Thank you." He also said, "Life is precious. It's the only thing we have besides the people we love." These comments are from a man who, according to the doctors, would never come out of a semiconscious state. It is WAY too soon to know whether your boyfriend will "be himself" two months from now.
You will be in my thoughts and prayers. Try to rest as much as you can. If your boyfriend is given a chance at life, he will need you even more when he wakes up.
How is your husband doing now? My dad is 80 and had a similar stroke. I saw him this weekend and he seems to be doing better, but his short term memory is just not there. I was wondering if your husband has any issues with short term memory? The therapists are wanting to discharge him from therapy again because they say that even though he is getting stronger, the therapy is not turing into any thing functional beccause of his short term memory. I don't want to see him lose therapy again. Any advice would be great....