This patient support community is for discussions relating to stroke, rehabilitation, ability to eat/swallow, alertness, bowel/bladder control, depression, motor skills, nutrition, orthotics/braces, pain, prevention, senses, and spasticity.
My brother, who's 55, recently suffered a Brain Stem stroke. At this time, he's unable to eat & has a feeding tube in his stomach. He has trouble swallowing. He has no sense of hot/cold on his left side. This is not his first stroke, but the first was a different type & only affected his right side with a tingling sensation.
I guess my question is what can he expect for the future? Once these areas are affected, will they ever come back? Can anything be helped with rehab?
He was very optomistic at first...before he understood what happened. Now he's becoming very depressed. I am very, very concerned about him. Being the only breadwinner in his family, he's very worried about this...but that's not for this message board.
What are his options for any type of recovery...or are there any?
My twin brother had a brain stem stroke.He has all the symptoms of it and has kept his thinking abilities.I'd like to know of all the treatments and or surgeries that can be done for him.It seems to me that the doctors where he's at dont know what to do for him.Is it that nothing can be done?He really needs some help and understanding of his condition.Mahalo(thank you)very much for any knowledge you can give us.
My father suffered a Brain Stem stroke on Saturday, and from what we are being told, it was due to a blocked basal artery. The stroke may have happened up to 15 hours prior to us finding him. When we found him he was barely breathing on his own. They inserted the breathing tube and have been keeping him comfortable, but now we are being told that he is no longer breathing on his own, that the machine is breathing for him. He has developed a fever, and has no movement on his right side. He has not awoke since finding hime, and he has very jerky left side movemnt....I guess my question would be: Where do we go from here?? The doctors have given us no hope, and have advised that he is not a candidate for removing the clot in the basal artery...we are devastated...do we leave him on the breathing tube and give it some time?? Or do we let him go??
My 59 year old brother-in-law suffered a Brain Stem Stroke 9 months ago. In the first few weeks, he could barely talk, and when he did, it was unintelligible. We were told that the greatest amount of recovery will be seen in the first 6-8 weeks and there would be little change after that. I believe this applies only to Brain Stem strokes. After about 8 weeks, he was speaking quite normally and still is. However, the paralysis on his left side remains, and we are led to understand that this won't change. His vision is somewhat affected, but we're not sure to what degree. He can see, watch TV and recognize people, but I'm not sure if he reads. The interesting part is that he's not depressed and has pretty much accepted his condition. We think this may be a result of anti-depressants, because prior to his stroke, we would have assumed this would be intolerable to him, as it would be to many. We are convinced that he will never be able to live independently, as we are advised by his medical staff. He is single and is living in a nursing home, where he gets some physical therapy and range-of-motion treatment. This is primarily to keep him flexible - not with any expectation of his being able to walk or use his left side again.
There's reasonable hope that he will regain his swallowing ability. MOst of his improvement will happen in the first 3 months but will continue up to a year so not all is lost. What goes against him is the fact that he's had prior strokes -- it may slow down recovery. He should not give up, get him to a therapist, start antidepressants (therapy alone is often not too helpful -- this is a big hit for patients on the emotional level), get him into support groups and be there for him. He is lucky to be alive and be with his family.
I am a brain stem stroke survivor. I had what is called a bilateral brain stem stroke(Both sides).
Mine was 16 months ago and I am 51 years old. I read all the posts and seen myself as if in a mirror. What I felt the worst about was "accepting" a new me....Not working or able to work was the worst. Mine was due to genetically smaller basiliar and vertibral arteries. What the docs say about recovery is a "book" generality. They said I would not walk....Guess what? I don't do well, but I get around...Speech? Yep, I was mr slur and drooled...I speak now..Lots of things started improving within a year....That is why social security disability is relentless on seeing if a stroke survivor improves in a year....I still have a numb hand, spasticity, numb foot and have what they will learn as being "stroke days", when it feels like a relapse.I see many of us are...One thing I had issues was with me thinking these symptoms are only "mine"..that I was the only one with them....I am like a walking pharmacy now..but I am alive...Please be aware that the brain stem does control breathing and heart rate. I am now on oxygen at night because my o2 levels dropped when I sleep....Don't let them give up....Fight the power..Hahahha....I can I can is the motto...Not I can't or won't....I said I can't because it is frustrating to start learning to talk and walk again....a lot of mental effort for sure...
I "am" a survivor....God Bless the caregivers too !!!! A sometimes thankless job..
My husband suffered a brain stem stroke three weeks ago. He cant breath on his own and is connected to a ventilator. He doesn't have any sensation in his body and he can only barely open his eyes, but he hears and know what we are telling him. Im just praying that in the future he can breath on his own and have a good life. Our prayers are constant and we hope to see him improve.
I posted a message this morning regarding the condition of my husband who suffer a brain stem stroke. Thanks God, I visited him two hours ago and found that he is no longer connected to a ventilator and is breathing on his own. Miracles occur, never give up!! Keep praying!!!
My friend had a brain stem stroke 3 years ago at the age of 39 and had all the symptoms of your husband. I will tell you it's a tough road ahead! You can go to www.judyackel.com to read about her progress.. keep in mind it's very slow.
Its been almost two months ago since my husband suffered a brain stem stroke. As of today, he is still in the hospital. His vitals are under control and almost everything is fine except he is suffering of what is call "lock in syndrome" Inside his head everything is find, but he cant talk neither move any part of his body. Is very sad to see him in this situation. If someone knows somebody suffering or who has suffered this condition, please let me know. Thanks!
My fiancee suffered a brain stem stroke July 5th, 2008. He is 39 years old. I have so much faith that he will have some recovery. He went through two bouts of sepsis shock which gave him some nerve damage to his arms and diaphram.
He has already regained some speech: this is sporadic, slow, and sometimes just mouthing of the words. He is now getting to eat ice chips and swallows water by spoon fulls. He can move his left hand up to his mouth. There is potential to feed himself.
His family has given up on him and the Neuro team, in the bigger hospital, has written him off well before these achievements. We are expecting a baby in the next 8 weeks and we have a 5 year old boy. This is his focus to get better. He will achieve more than those negative nellys ever thought he would. It will take a lot of hard work, support from myself and his network of friends, and the support of the staff in the hospital where he is at now.
This next year will bring many miracles. I was not much a believer in faith and the power of love before all this, but I have been humbled. Don't give up on these survivors. They are truly living miracles.
My mother 69 years old suffered a brain stem stroke October 27th, 2008. She was in Kurdistan to visit my sister. We flew directly the same day to Kurdistan and found that my mum is a very critical condition. I talked with doctors there and they told me that she got just 1% chance to survive. After 2 weeks at hospital we decided to take her back to Sweden where we live. During those 2 weeks my mum was in deep coma, sometimes she opened her eyes when I talked to her.
I flew with her back to Sweden in an ambulance airplane.
Now she is at hospital and having plans to move her home, because the doctors said that they are not optimistic about the improvements!
She breathes on her own, opening her eyes quite often, she opens her mouth when I told her that, and she understands what I tell her.
She feels her legs and arms, when we touch them, but she gets some short and often cramps and cant swallow, she gets food via tube in her nose (plans to give her a tube into stomach).
I have big hope that she gets better and improves by time, though what the doctors said.
I suffered a brain stem stroke on October 5th, 2006. I had paralysis on my left side, dual vision, some troubling swallowing and my voice changed a little but I could still speak. From all the research, and talking with doctors I can only say that it seems that all strokes are different, depending upon the cause, where they are and how soon you can get treatment. At this time, or as of today I would say I'm about 98% back where I was before. I have absolutely no balance and if I get up too fast I sometimes have to plop right back down. I can see and speak normally, but the voice tends to crack when I get nervous or excited, etc.. I sometimes have trouble swallowing colder drinks for some reason, and have had more than one dinner where I felt like a kid again, shooting tea out my nose. I have what they call hyperspasticity on my left side as well, which means I'm a little twitchy sometimes and my reflexes are a little sensitive as well. I went through about six weeks of physical therapy and I think one thing that benefitted me was that I was just 38 years old when this happened, and I was able to take to the exercises, etc. better than some of my stroke peers who were much older, again though, every stroke is different and the levels that people go through are different - I think I was extremely lucky and fortunate I was in a public place and got help extremely soon.
I did a lot of walking afterwards, I was self concious about the cane I had so I would go to Walmart, get a cart, put my cane in it and do laps around the store, sounds silly but it helped I think. You look normal and you have your own little walker. I spent hours dumping out pennies on a table and putting them back into a piggy bank. Lots of rocks from one plate to another. Lots of squats between balance beams and lots of walking on a treadmill. I still can't run all that great, I look like I'm skipping, but I have hopes I'll get there. I get depressed now and again about things, mostly that I'm single and now damaged goods, but I have found other hobbies and things to occupy my time...I even started taking some classes to learn computer programming so I can sit in front of a computer instead of what I used to do.
There is hope out there, and I see a lot of caregivers on this site and I know it has to be hard. I felt bad for my father, who I thank for his help the first couple of weeks, but I don't think he knew what to do and I could feel his pain. The fact that I kept throwing myself on the ground so I could try to get up didn't help either, but hey...I was teaching my brain to do things again. Help accomodate them - I wore Velcro shoes for 6 months, wore nothing but t-shirts for while...buttons suck, used a cane for awhile, and wore an eye patch for a little while as well as my brain learned to focus with both eyes again...but the pirate jokes were fun.
Again, every stroke is different, unfortunately, and I only wish the best for people out there. If you are a caregiver and get depressed there are support groups out there for you too as well as the stroke survivor. I wish you all the best and you're all in my prayers. Take care.
i had a brainstem stroke in 1998,i had locked in syndrome,i had no movement at all,trachy,no speech, for 4 years a feeding tube for years, 3 years hospital stayi was a complete,vegatable,luckliy you do not stay like that ,i was in 3 comas and had pnumonia, now im not paralized i had 2 more kids,i can type ,run my household look after 5 kids,i see the doctor only for my flu jab,excercise every other day and heres how i done it,firstly the doctors dont help,when you leave hospital no one cares no more,firstly cayenne pepper capsules,takes away paralization,nerve ear drops by john---- search as i forgot his name,circulation booster,try it as high as possible to regain or make new nerves i done 99 setting ,brillient bioanue i take 3 a day,and i have seen my damage reverse honest.i rented a celing track hoist,a standing sling ,i brought a balance ball, i sit forward and push myself backwards,and i go from side to side swinging my hips,next i go on my leg master sliding it out and in,then turn it around and do back and forth,then i lie down on my abs bench i brought on ebay for 20 dollars ,and i do 3 days a week, good luck ,you stay helpless with your brain swollen for about 5 years maybe less, any questons contact me look im 42 but ive been through it,breathing most important,thi chi teaches you to breath,you tube/grandmaster woo/susan matthews
God bless you, you just gave me some hope for our good friend, that had a brain stem stroke on Feb, 28, 2008. He has all your symptons exepet he has never been in coma. good luck to you and your family.
My cousin in law suffer a brainstem stroke.last 2 days. He is now unconcious, lying in ICU. Doctor said nothing can be done !!! and doctor also said, the percentage to do surgery is 0% !! due to the location is deep inside the brain.Doctor's comment is like cant rescue d. Now he is lying on the bed inside ICU,and is depend on the breathing equipment to breath. What should we family do ? is there anyway to recover him ? Anyone meet this situation before ?
Thank you for giving us hope!
My dad, 65 years old, suffered brainstem stroke (dt basillar artery thrombosis) on the 2nd of Feb, 2011, he is now in the locked-in state, fully conscious but unable to move all limbs, only blinking of eyes, on trachy as well with NG tube feeding.
I hope my dad can recover with time, you strengthen the hope, our family will pray hard and have faith, we will work hard and not give up.
To all other stroke patients and family members, stay strong and have faith, which i keep telling myself.
Another thing, some may consider acupunture which i read very helpful as well.
I too had a brain stem stroke in 2010, Christmas. Sound sleep is one of my issues. I do not like taking drugs for sleeping. Is this a problem for you as well?
I AM 66 YEARS old and went though intensive therapy for 4 months.with almost complete recovery. I still have some balance difficulty but I am told that will improve with time. This is my second stroke but the first stroke was mainly some facial paraslysis which was corrected with surgery. I am taking a host of drugs and wonder if that is the problem with my not being able to sleep.
I had a brain stem stroke up a mountain in italy so it took a while to get me to hospital.I couldf'nt swallow or even sit up,apparently i am lucky to be alive! they got me on my feet(but i woulndnt call it walking) and eating in the first three weeks. when i got back to England my rehab really started. I was in hospital for 6 months(but felt longer) I can walk long distances ride a bike and horse eat, talk and go to the gym. so don't give up have been looking everywhere for stories of inspiration but can't find any. i am hopeing that once you are better you wouldnt bother writing. but anyway looks like im lucky. So im writing this to give hope to all of you in recovery.
My mother had a brain stroke she is 66. she was strong women and independent. Now she can't breathe by her own, eat, walk, talk, we don't even know her capability. The doctor is saying they can not do much for her. It happen this summer. Do you think there's hope for my mother? I really try to believe one day she's going to breathe again or a doctor can help her to regain at least 85% of her capability.I will do anything for my mom to come back to us. I am ready to travel any where in the world to find the doctor that going to help her.
How long did you have a PEG tube insreted into your stomach?
My father, aged 57, suffered a brain stem stroke on 29th Sept 2012. He is at home now. Doesn't need oxygen. Can breathe on his own. Had a trach for one month. Can swallow only 2 spoons of water, has a PEG tube in his stomach. He has full paralysis except for head/neck movement and eye blinking.
Can you share your story in detail with us for us to draw inspiration?
Looks like you posted a couple years ago, but would be very interested in learning how you are doing. My boyfriend had his BSS in Nov 2011 and he has come a really long way, but I am constantly looking for ways to help him more. His biggest problem is alertness...sometimes he is right there and other times he is locked in. It's so sporadic I keep trying to figure out how to help him be more present, more of the time, so he can benefit from the little bit of therapy we are able to get for him, or do ourselves. Please, I'm sure we'd all love to hear how you are doing and what you did to get where you are. Thank you.
Hello , My husband had multiple strokes at the brain stem august twenty second 2013. Its been just about two months. The doctors gave him no hope. He was on a vent and had a peg tube and limited consciousness. I was told to think about his quality of life. All I could think was that he is alive. He is my husband an I love him. He deserves a chance to recover. He was pushed all most immediately from the first hospital to a so called rehab. He came off the vent in three days of beening there. He still has the trach because his level of consciousness didn't alow him to manage his own secretions. Because of his sleepy state he was pushed from rehab to home. Since being home he is more alert and awake. He has shown movement in all his limbs where doctors said there would be non.. We play his favorite music and talk to him all the time. Believe in the power of god and love. The lord has the last say!
Hello my name is Terina. I am very interested in talking with you. I have a nephew that had a brain stem stroke in 2010 and is still suffering with locked in syndrome. I read your post and it is very encouraging. I take care of him daily and would love to get some tips from you.
Hello, I am so glad my post encouraged you. God bless you for taking care of your nephew and loving him through this. Its my understanding that locked in is not permanent ,so hope is always there. As much as medical science knows about the brain, there are things that will remain unknown to man. I have been told that sleep is the brain repairing . We keep the room bright and some sound going always. We get him out of bed every day and sit him in his favorite chair. PT and OT come in and work with him. I don't turn away any therapy. Since this stroke happened to our family my children and I have been driven to help my husband. He always said "we are four and we will remain four" . Today he smiled for me.!
Hello, My Dad just suffered from a brain stem stroke as well and your story is very inspiring. were you responsive when it first happened? and what were the drs telling your family? our drs are telling us we have no hope and to make arrangements. but he is being responsive, like when i show him a thumbs up he does it back or when i say daddy squeeze my hand, he does that as well.
My husband had a right side brain stem stroke Jan. 2013. Don't let the doctors over medicate. If they can't prove why they are giving him something request that it be dropped. My husband is only on a blood platelet thinner and a low dose aspirin. Some of the drugs they tried putting him on he did not need once out of the hospital environment. They were keeping him sleepy, lethargic and dizzy. He was in the hospital until April 5 of 2013. He has been doing speech therapy and physical therapy since that time. He still has a PEG tube and cannot swallow at all. His balance is still not good because of the left leg. He has a lot of secretions that he has to spit out. We did try getting a botox treatment injected into his CP muscle in his throat. It did help with the secretions and he did talk clearer. It only lasts 3 months though. It did not correct the inability to swallow because he needs a different procedure for that, a laryngeal suspension lift.
I had a stroke October 1, 2013 while teaching. I was in ICU and had tPA protocol. My CVA was in my brain stem. I've been told that my personality has changed, my voice is unrecognizeable, I've lost a lot of the function on the left side of my body, my body no longer regulates sleep. It is now 2:41 AM, I've taken Ambien, and still can't sleep. It has been like that every day since the stroke except for a few days when I had the flu and a high fever. I have double vision and my neuro opthamologist said that prisms will not help me because my problem is neurological, not with the lenses. I am supposed to be wearing a patch. I have balance problems, and wearing the patch makes that 100 times worse. Anyway, I just wanted to say that I have improved and your loved one will as well. I was on soft foods for I don't know how long. I'm still on mechanically soft. But I keep trying to work myself back. My family is totally non supportive. It's amazing to me. When I get well, I'm moving far away from them. Somewhere near the ocean. Anyway, a girl has to have a dream and a plan. Best wishes to you all.
I suffered a brain stem stroke when I was 18. I am 23 now. I have two bachelor's degrees, speak 3 languages (incl. english). I am a paraeducator for first graders and a concert pianist. I walk, albeit not straight or stable, but I walk. I use a walking stick or someone's arm, I even travel quite often to foreign countries. I have no problem breathing. I do choke on food. But I still eat solid food.
Anyway, what I'm trying to say is...there's hope. Please don't give up.
Go to you tube and look up Reuven Surall and see his videos. He had a brain stem stroke and had the lock in syndrome and today he is whole. Walking, talking, sleeping everything is good. He believed God!
I came across your comment as I was browsing for some info on Locked in stroke of brain stem for my dad , who is currently in ICU from the past 5 days. I would like to know how your dad is now, since it has been almost 3 years now. Please let us know.
Yes !!! Whatever You Do (Dont pay attention to Bad News That the Drs Might tell you !! Just Focus on your love one and God !!!!) Talk To God Daily & Thank Him For bring your love one this far !! And Tell you Love one how proud you are of (him or her) smile ,laugh and talk to them daily !
And watch How God Steps in ! It Might start off slow But just know that Everyday adds to progression !!! :)
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