What is a Brain Stem Stroke?

I have VA Medical, and I had a stroke about two months ago. I called my doctor when it happened. I had half a face and my eyes were going in and out of focus. He said to call him the next day to give him an update. I did and all my symptoms were the same. This was on a Friday. He then said that since it was Friday, there was nothing he could do, to call him back on Monday so I did.

Instead of seeing me, he gave me an appointment date for two weeks out for testing!! I thought strokes were supposed to be an emergency, but he didn't seem to care. I waited the two weeks and symptoms had lessened, but my eyes still have times of going out of focus. They did the tests and told me I had a brain stem stroke and showed me the photos. They said it was quite large but it broke up "somehow". Only God gets the credit for breaking up the clot, because the VA didn't seem to care. I started taking aspirin on my own. Hope it works because deadly strokes run in my family. I wish we veterans had better medical care. We hate the VA!

My sister in law suffered brain stem stroke at 48 two weeks ago. We have been given all info regarding her prognosis. She is deaf, blind and will have altered brain functions. She has yet to come out of her coma due to uncontrolled blood pressure. Statements by all doctors are that she would be bedridden and no longer the person that she once was. So they would like to turn to comfort care. My husband would like 100 percent assurance that she will have no function before he can decide.

My name is Brad and I am 50 years old. I had a brain stem stroke in November 2014. I was unable to walk or use the bathroom for four months. The doctor called me a miracle. I also had blurred vision, but I got it all back. It's been almost a year now and I feel great, but have lots of survivors guilt. Miracles do happen.

I had my brain stem stroke five months ago! I have had great support from my friends and family. I am about 95 pecent recovered now. I was 37 when I had my stroke. I do lots of daily OT, PT and ST. I am down to once a week and doing daily home therapy alone. The point is, don't ever give up hope. You can do anything you put your mind to. Good luck everyone.

My husband had a brain stem stroke on Christmas Eve, and another on Dec. 29, which put him in a coma.

We were told to withdraw treatment and fluids, but we refused to withdraw fluids. We begged for him to be treated as if he might survive but were told no. We asked for a second opinion and were told there is no one to give it.

We fought and fought and eventually got treatment reinstated. He is opening his eyes now and making small improvements, I am moved to tears by many of the posts, and heartened to hear of success stories.

It was six weeks yesterday since my husband fell into the coma. He is 59 and we are constantly being told there is no hope, constantly being told we can let him die anytime. They are eager to give him morphine which so far we have resisted. He has a chest infection which we know may kill him, but we just hope and pray he will survive

My brother is 39 and just had his second stroke. His fist stroke at 35 took half his cerebellum. This stroke took the second half of his cerebellum and just started spreading to his brain stem. They are loosely using the term "locked in syndrome" because he does have some movements, however it takes him a while to make movements and doctors fly in and out of the room.

They are getting ready to do a trach and feeding tube. His eyes are open and he is fully aware of what is going on around him and blinks answers with his eyes and even facial expressions smile with jokes. We are not ready to give up but doctors do not give much hope. I would like to hear from anyone else who has been here.

My mother is 90 and this is her story. God bless you, mamma!

Yesterday, I had no hope left. The doctors and nurses were all saying there was no hope, but God is not a human! In God there is always hope, even when people peck away at all you faith and hope with negative words. They were destroying all my faith and all my hope, and I was defenseless against their daily assault! Sometimes doctors are evil and always they are cruel, telling people that they must inform you of all possible negative possibilities! That stuff is mental cruelty and torture to the mind and soul. I have barely eaten, and I felt totally destroyed. I just wanted to die! They have pecked away at all my hope.

Jesus told me put on the armor of God and that God knows her heart! Do everything for her that you can do, and trust God to do for her what you cannot do.

I could not stabilize her heart rate, blood pressure, or lung functions to control oxygen in the blood. God did all of that for me because I trusted in God and Jesus. I could not dissolve the blood in the brain. God did all of that for me because I trusted in God and Jesus. I could not heal the damaged brain cells, caused by the blood. God did all of that for me because I prayed and asked him to, and because I trusted in God and Jesus.

If you trust God and Jesus, pray for a miracle. He might give you one if you really believe in him. He is helping me and my mom rest in the arms of Jesus. Good night and amen!

I had a bleed in the brain stem and it has resulted in double vision. My eye does not create tears now so I have to keep it lubricated. Also, I do not have any balance and I can only walk with a walker. All this has resulted in me being home alone most of the time. Has anyone heard of anything that will give me my balance back? I don't care about the eye as balance is more important to me as it will give back my life. I am hoping someone can help me.

I had a brain stem stroke in September of 2011. I got to the ER within 90 minutes after the onset of loss of balance. I was treated with TPA and sent to a Level 1 hospital, and was in the hospital for three days.

My husband had a brain stem stroke last night. I got him to the ER within 25 minutes of his first symptom and he got treatment about an hour after his arrival. He is expected to be discharged tomorrow if his balance hasn't been affected. The waiting is hard and I know unless he makes the lifestyle changes that doctors have been advising him to for decades, he will stroke again before long.

My boyfriend had a brain stem stroke in November 2011, then respiratory collapse three weeks later. The doctors said we should stop feeding him and let him die. He was asleep for three months after. He is still in a long-term facility and has had no therapy (no insurance) but he continues to improve. He no longer needs a trach but still has a feeding tube. He does not walk or talk, but can open his right eye and move the left side well and right side little.

He is doing many things they said he would not and we have hope he could recover even more with therapy. The medicare/medicaid system in this country is very screwed up, but you've got to keep fighting. I believe he hears and understands everything, but just cannot make his body do what he wants.

Don't give up, especially if the doctors tell you to do so within the first month(s). It takes six to nine months for the brain swelling to go down, so there is hope if they can survive.

We are there with him every single day, and I believe he is only still alive because we are there encouraging him. If we weren't he would have given up because the care in these facilities is minimal.

Sad that there are so few support groups available for families after these events, but if you can, find one. You need other people going through similar experiences if you can find them.

Guess I should add the stroke occurred two years ago, and special thanks to all the doctors and nurses at St. David's hospital in Austin, Texas who did a great job!

@Post 99: Hope your brother is doing better. This is very similar to the stroke I had. I was lucky and survived it with the God's help. I still have some problems walking and some slight slurring of my speech but when I consider that I had to be put into a coma, clinically died for seven minutes, almost bit my own tongue off and had a trach done so I could breathe, I consider myself lucky.

My brother had brain stem stroke in June 2012. He was already in a coma when he was brought to the hospital, even though he complained of dizziness just an hour before.

It is now five days since that day and just had tracheotomy this morning. The doctors' prognosis is not good. We are now fully trusting on the power of prayers from all the people who love him. We will not lose hope.

What kind of drugs do you or your relatives receive for brain stem stroke? My father had a brain stem stroke, and he received pentoxifylline, vitamins, some antibiotics for pneumonia, heparin, some drugs for his heart and analgesics. Is there any powerful drug for brain stem stroke and for coma?

Maybe in my country (Macedonia) we don't have the drugs that you have in the USA. Maybe I can find those drugs in another european country?

I will be waiting for your suggestions and help!

My son (24 years old) plugged his shunt in his head then had Bilateral vertebral artery strokes, and a clot post op in his brain. We never thought he would be off a ventilator, but now after 11 months in hospital and nine months at home he makes small strides. He has his tracheostomy out and seems to swallow, but now needs speech therapy to help with that. He has uttered a few words. We hold out hope.

My grandmother has been at the hospital in an unconscious state for the past three days. This morning she was put on a ventilator as the doctors said she can't breathe on her own now, but fortunately after the ventilator was removed, she started breathing normally but is still unconscious, like she can't respond or talk at all. The doctors tried an mri but she has a metal piece inserted in her knee making it impossible. The doctors are not able to diagnose her. Any help?

My mother was 77 when she died in July. She was fine the night before. She had lots of problems. She had a pacemaker, had dementia, was double amputee due to vascular issues and she was on coumadin. At 3 a.m., she was rattling her bed to summon her caretaker. the caretaker said she lost control of bladder and was sweating. She changed her and the bedding and mom seemed okay and went to sleep. At 7:30 a.m., she found mom kind of sideways on her bed and lifted her hospital bed a bit, so that she could breathe easier. She didn't say much, just, "oh God, Oh God," then when asked, shook her head that nothing hurt. Also, she tried to say the caretaker's name, but not clearly. She was gone before 1 p.m.

Can anybody tell me if they think this was some sort of stroke? No other symptoms, like a crooked smile. She was moving her arms, but had no legs, so we don't know about that. She was also a little warm, but not terribly. Also, her lips were very red. Mom had something similar happen in the winter of 2011, just a few months earlier, but it passed quickly. I am just looking for some answers. I pray for all of you and your families. I just need some answers. I am wondering if she could have been saved, or did she have too many problems? I read online that amputees live up to five years only. It will be five years in September since her first leg was taken and two years ago since her second.

In Feb 2011 my husband's voice suddenly went hoarse. He then said he felt really dizzy, and when he tried to stand up he fell over. he had lost his balance on his left side, and his vision was also blurred.

having seen a doctor, and my husband having no immediate signs of slurred speech, drooping of the face, and having full control and strength of his limbs, he was thought to have an ear infection. Within a couple of days my husband was able to walk unaided, and by the end of the first week his balance was starting to come back, but he then lost pain sensation down his right side and the ability to feel temperature control.

At this stage he was sent for a scan, which diagnosed a brain stem stroke (Wallenberg's syndrome), but he was told he would make a complete recovery, and within three weeks was back to work. Today my husband suffered another stroke. this time his speech was slightly slurred and he has lost control of his right side. At the moment I am waiting for the doctor. Qill this keep happening? and each time get worse?

my close cousin had this. he is only 12. my family is taking it hard and not a day goes by that we don't pray for my awesome cousin. who knows if he will recover? truthfully, i can feel in my heart that he will and i thank the doctors for what they did but now i have all my faith in god right now, and if god's ready to take my cousin, fine, but I'm praying he won't because I love him so much and god has different paths for people. One way or another, we have to accept reality and yeah, it's hard, but have faith, never lose hope and keep praying.

No matter what the doctors say, and trust me, they don't know; only the savior from up above knows and he will tell us the plan and our destiny. So all of you, god bless you and don't worry. we will all get through this together because right now god is carrying our sick loved ones, okay?

So remember everyone, stay strong OK? Love you all because i know what you guys are going through and my cousin is doing better but we might have to make a decision and I'm scared. Life does go on and maybe our sick ones want to be happy with god and we will just have to learn how to accept that.

God will come when he knows the time is right. Just keep praying and never, ever give up. God bless you all. I know he will and he does. --miranda g.

In March 2009, I suffered a brain stem stroke at the age of 65 resulting in double vision and loss of balance. Weeks after the incident it was diagnosed when I had an mri. After physical therapy and lots of exercise I subsequently totally recovered with no apparent debilitating side affects.

Although I do not feel the way I felt prior to my stoke, it's fair to say, I've reached a level of recovery that very closely approaches a return to normalcy. Hopefully, my situation can be viewed as encouraging others to have hope and faith in knowing that recovery is quite possible. God bless and good luck to everyone in our situation.

My mother in law, aged 89, bad a brain stem stroke and the hospital said she would not recover. She was put on "The Liverpool Pathway" which meant, as we were told, was, no further treatment and was to be given only pain relief so that she could die with dignity and not in pain. What they did not say was that all food and water would also be stopped!

She was gradually slipping away until the family insisted the she be given food and water. Three weeks after she was supposed to be dead she was feeding herself, walking with assistance and talking. She does not appear to have lost the use of any of her limbs but her speech is slightly slurred, and this week, there is a meeting between the family and the rehabilitation team. She may be going home!

This is the 89 year old who they had had down to die on the "Liverpool Pathway," so beware if they mention it! It just clears a bed in a hospital!

two week ago my brother had a brain stem stroke. sorry to say, he didn't make it. he was only 53. RIP my brother.

my dad, who is 77, suffered a brain stem stroke several days ago. He is non responsive. His eyes are open, but we are not sure if he sees us or hears us. He is on dialysis, but has had breathing trouble. He was put on a vent a couple of days ago, and taken off two days later and is breathing with a regular oxygen mask. He is getting nasal feeding which they may move to his stomach. The doctor says it is unlikely he will recover and we should consider stopping his dyalisis. Ugh. We remain cautiously optimistic.

my father had a brain stem stroke two years ago at age 64. He was in a coma and couldn't breathe on his own for five months in the hospital. He went to rehab to learn to walk again but unfortunately he cannot swallow still. He is getting vital stem but doesn't seem to be working. Any other advice or excellent swallowing centers i can take him to?

my grandfather had a brain stem stroke at the age of 68 and it all started in the morning when he could not walk or talk so my grandmother called the ambulance and they took him to hospital. They had x-rays, etc., etc., and they found out he had brain stem stroke and they gave him some medicine like aspirin and he puked blood out twice after a while but then he got worse. The doctors had to put him on oxygen as he couldn't breathe. Unfortunately he passed away within three days. (R.I.P., grandfather)

My father suffered brain stem stroke Friday. at 6 a.m. He went to the hospital and carried at the neurology department, intensive care. His vital functions (heart, lungs, blood pressure, reins) are stable. Also, he is not in a deep coma, but he can not open the eyes and he is in a semi-coma condition.

Could any of you tell me is that any hope for survival and anything useful in this situation?

I had a brain stem stroke on feb. 2, 2011. It affected my left side, leaving me with a weak arm and leg. I spent a month in the hospital in Boise, Idaho. After going through in house treatment and now outpatient, I feel blessed.

The main problem I have is a slight limp, and an arm that is a little stubborn, but it is getting stronger every day.

I truly believe the reason my stroke was not more severe was that when I started feeling strange, I took three full strength aspirins, and then went to the hospital 10 or 15 minutes later, and treatment was not started for almost five hours. I had to be transferred, etc, etc. So I truly believe the aspirins saved my life!

My 70 year old father suffered a brain stem stroke on Monday. He was on a ventilator and I was told by the doctors he will not recover. He was taken off the ventilator Thursday and is now breathing on his own. His speech is fine and the only damage the doctors can see is his left wrist is limp. He can move his fingers, just not his wrist. His doctors are now calling him the "miracle man".

He also has bone cancer and came back from End Stage Renal Failure. He is a fighter. Do what you believe is right and don't let the doctors convince you otherwise.

I was told Tuesday to call our family members to say their goodbyes, now he is up and talking, fought off his 106.9 fever and conquered his pneumonia. They can come back from this, they just have to want to. And we have to support them, instead of always taking what the doctors say at face value.

reading your posts give me hope and i know that i am not alone.

I had a stroke in my brainstem june of 2010. I have bad ataxia (fall all the time), and double vision anywhere besides direct center. I gasp for air and have chest pains a lot. I'm starting to see permanent on a lot of paperwork.

I can be up for ten or fifteen minutes doing something then i have to sit or lie down. I can't drive or go in a store where things are moving in my peripheral vision or I'll get sick. Nine months later, it's the same as the days after it happened.

my husband had a brain stem stroke two weeks ago. It wasn't diagnosed although we told doctors we thought he was having a stroke, so i am very upset.

He cannot move anything other than eyes, and can cough and swallow some. His breathing is not great and needs an oxygen mask. The doctors are definitely wanting him to go, e.g., let a chest infection "take him" in their words. We asked that he be fed by naso gastric tube -- against the doctors wishes, so he is having food.

I get these small glimmers of hope that he could improve, but mainly it seems he will die. It is a living nightmare for him and us all. He is 48 and we have a 13 year old daughter.

My dad, 53, suffered a brain stem stroke while in the hospital. He was treated right away.

It has been three weeks and he is still on a trach ventilator. The Dr. and nurses are very positive about his recovery. He is sitting up in the bed and he cries a lot, but it seems as if he is just looking through me or doesn't know me or our family at times. I assume this is normal.

Does anyone else know if it is possible that he could start remembering again? Please some advice needed.

My dearest daddy suffered a hemorrhagic stroke in the brain stem last Wednesday. He was able able to speak through slurred speech, and was breathing on his own, then things took a turn, and now he is on a ventilator, and has moments where he is almost in a trance state.

Recently he has started to respond to commands,and is alert more than ever.

I believe that God is a powerful and awesome God, and praying for a miracle. the doctors give my daddy little hope for survival. I have read the other stories and am hopeful.

i am Major Suri in the Army, posted in the field area in J&K. My father suffered a hemorrhagic stroke with left thalamic bleed six months back, and though he was treated by a neurophysician, he is still not able to think, act, walk, move, speak normally, in spite of regular physiotherapy over the last five months. can you please advise what to do?/where to take him?

My brother, aged 46 years, just had a brainstem stroke last week. The doctor said there is no hope. I would like to ask anon45472, post 23, how did you recover from a vegetable state? because this is what my brother is in right now, and i believe that he is aware of our presence just not able to tell or let us know.

If you could tell me a little more, anything would be great. Your post gives me and my family hope.

My husband had a brain stem stroke eight months ago. He learned to walk, is somewhat gaited but no assistance is needed. His eyes are biggest challenge with double vision. Right eye has gained 70 percent, but needs to move more to correct vision. Anyone else having this same scenario? Maybe we have already had our miracle. They feel it was brought on by migraine which he was having constantly and caused problems with ocular vision.

my partner had a brain stem stroke 12 days ago, at age 35. he is fit and healthy, and he is in the best hospital: hope hospital, salford, manchester. he is in nhdu critical. he has a bleed with drain attached, swelling and clots. docs told us they fear the worst. we hope and pray. we have a baby.

My dad, age 84, had a brain stem stroke in July. Luckily he was only 1 mile from a hospital that specializes in stroke treatment. He aspirated on vomit and got aspiration pneumonia. His other issues were double vision, blurred vision, could not swallow, loss of temperature sensation on one side, muscle weakness on one side and loss of balance. He was unable to stand up straight. He fell to the left every time he tried to stand up. He also had hiccups 24/7.

He was diagnosed with Wallenberg's Syndrome Stroke, which is a type of brain stem stroke. He was in ICU for three days, a regular room for four days and inpatient rehab for two and a half weeks. He had VitalStim Therapy on his throat and was able to swallow after that. During rehab he had to relearn how to stand up straight and learn to walk using a walker. The hiccups went away after two weeks. He also had trouble urinating without medication.

His glucose was over 600 after the stroke and was told he is diabetic which is what caused the stroke. He is not overweight. Had no idea he was diabetic. It has been almost six months since the stroke. He attended two rounds of physical therapy and is taking some more VitalStim therapy to reinforce his swallowing abilities. He is walking without a cane now but he continues to have some imbalance. His blurry vision is greatly improved. The double vision only lasted two weeks.

He also took a 30 day treatment at the Sensory Learning Center where they target vestibular, ocular and auditory senses. He is better. Time will tell just how much the sensory learning really helped as the effects of it can continue to show up for three to four months after the treatments end. If you have the symptoms above, it is possible you have had a Wallenberg's Syndrome Stroke. There is no cure but a lot of hard work and patience will help.

My love and prayers to you all. My mother has suffered a brain stem stroke and has difficulty moving, breathing and swallowing. The doctors presumed she had a flu infection and arrogantly wouldn't reconsider. Now its too late for anticoagulant intervention to limit the damage.

Wonder why there are no posts on miraculous Hyperbaric Oxygen treatments - supposed to be very effective in stroke/brain injury recovery, but I can't afford to pay for them. Naturally our doctors are not interested. I'm so disappointed with the callous medical profession, content to destroy peoples lives by their neglect and supercilious arrogance. Scottish doctors I'm talking about.

It has been two years since I experienced a brain stem stroke. Along with double and even triple vision, I cold not walk, could not swallow, could not urinate. I had experienced numbness on the right side of my body and the lack of temperature sensation on my right. Those symptoms are still present along with acute nerve pain.

Worst of all, at least in the beginning is that I had violent hiccups for nine days which were finally controlled by a powerful muscle relaxer.

I was in the hospital for six days including four in ICU then spent two weeks in a rehab hospital learning to walk and swallow again.

I have overcome most of all the complications with the exception of the nerve pain and the fatigue that has been with me from the start as well. I still have some issues with my eyes at times, mostly when I am tired as they will not focus well.

If anyone has a remedy for the nerve pain please post it up here. The neurontin that was prescribed to me does not work.

My name is Robbie. I suffered a brain stem stroke 13 months ago at the age of 32. I was in a locked-in state for five weeks, completely paralyzed from the neck down. I spent a total of five months in hospital and ICU. I was on a ventilator, feeding tube and dialysis. I lost over 40 pounds of muscle.

However, I have made great strides in my recovery. I am completely independent and able to walk. It’s been a long and hard road of physio and exercise. The doctors had originally told my wife that I was not going to survive and that they wanted to take me off life support. So there is hope, as long as you have will and determination.

I allowed my mother to be with god today after suffering a brain stem stroke two days ago after a successful surgery to remove colon cancer. She was completely unresponsive and in a deep coma.

Her organs started to fail, particularly her kidneys due high blood pressure, smoking and diabetes. I believe that if she was healthier, I would have waited longer but after three consultations with three different doctors and a neurologist, it was the thing to do.

As expected, she passed within minutes once the breathing tube was removed. God bless all of you for fighting to live and the families for their prayers.

I was shoved from behind and my neck whiplash back. One week later, I was admitted to the ICU with a brain stem stroke. I was in ICU on a ventilator for six days before the doctors decided to give me a trach tube and feeding tube.

I was kept in the ICU for another six days before moving me to inpatient rehab. I was there for 14 days before being sent home with the trach and feeding tube. I am now at 58 days recovery and I am still not able to swallow my saliva or any food.

My trach tube is out and the doctors are hopeful that I might be able to swallow again. The Rehab therapist is trying many different exercises to try to bring back my swallow but I still spit a lot. I am able to speak, walk, and drive even though I still have some numbness on my left side.

My father died in October. R.I.P. After a short battle with cancer, we found out a week before he died that he had cancer. First we found out he had it in his head and then we later found out that he had it in his bones, adrenal glands and lungs, as well.

After the operation, about four to five days, he had suffered a brain stem stroke. he lost the feelings in his legs, could barely speak, and there would have been no way he could walk because he already was off balance because of his surgery but we knew there would be no hope trying as he couldn't even feel his legs at this point. We could see the beat though his shirt of his heart. it was pounding rapidly, and one of his legs and one of his hands felt very cold. he had pins and needles in his hand.

I'm happy to read that some people have and are beating this brain stem stroke as it got the better of my dad.

Please if anyone knows, can they tell me if he would have had any pain or would have he been aware? thanks.

my uncle suffered a brain stem stroke two weeks ago. he's on a ventilator and there are no signs of progress. please advise a good doctor anywhere in the world. God bless.

My friend had a brain stem stroke three weeks ago. They say that these strokes can be rolling -- that is subtly recurring, to suddenly catastrophic. He was frustrated with diabetes and blood pressure medication and stopped taking it for two years, then went through severely stressful life changes.

He was in ICU and the main hospital for a week then transferred to an acute rehab facility where he will probably spend a total of three weeks. He is having trouble managing nausea vs. balance. The meds were not helping him resynchronize his vestibular system. He still has a little double vision and balance is tough. We're hoping he'll be able to use a cane by the time he leaves next week. Currently he uses a walker and a wheelchair by himself when he is tired, which is most of the time.

He's getting better and better at targeting the point he's reaching for on the affected side of his body and his swallowing and speech are nearly completely recovered. Be attentive to subtle complaints, manage your blood pressure, cholesterol and blood sugar, get exercise and manage stress. Good luck to all of you. My thoughts are with you.

My 80 year old Grandmother also had a massive brain stroke last week. I've seen her get worse, from being alert to being in a locked state where she cannot talk, move or see. She is completely blind now. I don't want to see my grandmother suffer any longer and the family will honor her wishes (on her will) to not prolong her life. God bless you, Lola! We love you!

this is for heidi g, anon77217 and anyone else that has a desire to go one step further with their testimony and write a book. i suggest you contact a spiritual writer like Max Lucado to find out the best way about writing your testimony.

My wife, 35 years old, had a brainstem stroke nine months ago. She lost her balance, fine speech control and has blurred vision. Progress has been slow but she is improving.

The stroke originated from the residue of a brain stem tumor that had been partially removed by surgery 20 years ago. When I first met her, 15 years ago, she still had some problems with balance after the tumor removal, but she started riding a bike and the balance got better. The main issue at the moment is fatigue,if we try to do too much she is worn out the next day. At the moment she is beginning to walk short distances of 5-10m. Swimming is good as the balance problem goes away in the water.

My best friend, who is 37, had a brain stem stroke five weeks ago after being given too much pain medication in the hospital. She is in a locked-in state. After two 1/2 weeks she began to open her eyes and is trying to breathe over the vent. She can blink to answer questions.

We pray for a full recovery. She has a very supportive family and large group of church friends that will get her through this, just keeping the faith. We want her her with us again no matter what. We have faith in God.

I have a 50 year old daughter who had a brain stem stroke at age four. After thousands of trips to doctors, etc., it was finally diagnosed when she was 30. She is fine.

I was 16 in 2008 when I had a brainstem bleed in the medulla oblongata due to a genetic disorder of cavernous malformations in the brain. My headache never went away, my balance started to have issues, my tongue deviated to the right, and my breathing and swallowing worsened.

I had to get a trach, g-tube because i lost my ability to swallow and breathe. I also lost mobility and feeling on my left side, and got double vision, but it didn't affect me cognitively.

For three months in the ICU, I communicated through sign language. The doctors removed the blood, saying that if they didn't do the surgery, I wouldn't live. Thank God I survived and recovered in the nine months at rehab.

I am 18 now. Today, I'm able to walk with the help of a walker (although my left side is still numb and weak), speak normally, and breathe without a ventilator because of the grace and power of God.

I'm lucky to be here today and still improving. Thank you Lord so much for giving me the strength to endure this trial.

My grandfather suffered a brain stem stroke a few days back. His pulse, oxygen level, blood pressure, and level of breathe is all stable. The doctors have given 50/50 chance. He is in a locked in state. We had to push the doctors to do ct scans, and get him into ICU. We've had to advocate so much as a family. Reading the above posts have been a little reassuring. Anything else we can do?

I saw a man go from talking and being coherent to the locked in state where he could not talk or hardly move within two hours. Very scary.

My husband's grandmother suffered A brain stem stroke a week ago. She is 81 years old. She is totally locked in but has began to open her eyes in the past few days.

The entire family is fighting regarding keeping her on the life support or just letting her go to be with god. Morally, most of the family feels that she is suffering and it is inhumane to keep her hooked up to a machine. I hope that there is some advice out there to help our family get through this. And some type of ease to make the fighting and arguing stop.

It is tearing everyone apart. --Randy In Michigan

Heidi in Hollister - Thank you for your input. My dear friend also knows the Lord. He is her strength, carrying her through this brain stem stroke recovery.

We trust in a big God to supply all we need - maybe it's not through recovery as much as it's a testimony of peace in hard places. Thankfully we know a resurrected Savior who will also resurrect our lowly bodies.

Until then - To God be the glory! Pirceyx2

I am a forty-nine year old woman who suffered from trigeminal neuralgia for six years. It was so unbearable that I finally decided to have micro-decompression surgery on my brain. This was in october 2008.

There was so much swelling in my brain that it caused bleeding into my brain stem, resulting in a brain stem stroke. I woke up with blurred vision, blurred speech, unable to hear on one side, and I was paralyzed on my right side.

I can now see clearly. I can walk because my family never gave up on me since PT were afraid to touch me. My sons were at my house every morning before work to exercise my legs and build core strength.

I can walk, yet I have no feeling in my left foot or knee. I can speak, but I have short term memory loss. I have neurological burning all of the time. I have learned to deal with the pain. There are no pain meds they can give me, as they would only mask the pain and I would become addicted.

I take Xanax twice daily to calm me through the burning. I praise God. I know that I was lucky to have the brain stem stroke during surgery, as the bleeding was immediately stopped. I know that do because all of the brain swelling, I could have stroked out at home and died immediately.

At least the trigeminal neuralgia was fixed. I choose to think positively about reasons I was lucky to survive.

Being positive and faith in God has pulled me through. I would like to write an inspirational book. I'm not sure how to go about it. I have heard that I should do this so many times, who knows? Maybe some day. Any ideas? My life has been totally turned around.

I had a wonderful job and very active life. That has all changed now. God has left me here for some reason and I believe showing others my strength through God and staying positive are two of the reasons I was left here. God Bless and good luck to all of you going through this. Heidi G., Hollister, CA

I had a brainstem stroke in May of 1999. Initially I experienced the total locked in syndrome and was only able to blink. Slowly, things woke up, to where I have resumed life as before. I recovered about 95 percent of where I was before the stroke.

I credit doctors, quick blood thinning therapy and God's grace, for my unusual outcome. I hope others will find healing as I have. David, Wisconsin - now 51

My dad had brain stem stroke in both cerebellum and brain stem with thrombus in the basilar artery.

He was admitted to the hospital in December. After 90 days he was discharged from there. Now he has slight movement in his right side hand and leg, but he is not fully conscious and isn't able to speak. He still has a food tube. The doctor suggested doing gastronomy to feed him more to help him recover sooner.

my brother-in-law had a stroke about a year and a half ago. He lost much use of his left leg and is mostly blind from optic nerve damage. Recently he has lost almost all use of his legs, noticed a severe loss of hearing in his right ear. He was hospitalized three weeks ago and again now. Thank goodness he had one of his less lucid spells during an EEG, awful but maybe they can diagnose him now.

They have thrown around 'brain stem stroke' as a possible cause. Just hope they can be sure.

My Mom is 85 and had a brain stem stroke three months ago right after a successful surgery to her back. She went into a coma. She has improved a little and can now squeeze my hand and wriggle her toes. She half opens her left eye most days for a short duration. She understands what is being said. She is trying to talk now. I believe we have a long way to go and am hopeful.

My mother had a brain stem stroke seven days ago. She is opening her eyes for longer periods each day. She can track somewhat vertically. She opens her eyes some when we speak, or when I touch her hand. We are sad but hopeful.

Well after reading numerous comments on the stroke, I must be pretty fortunate. I had a brain stem stroke in September of 2008. A year and a half later I still can't talk normally but am supposed to fully recover.

I was 15 at the time so youth was on my side. God must have a pretty big plan for me because the doctors told my parents at first that there was nothing they could do and I would slowly deteriorate to death.

Then another doctor decided to try removing the clot after 53 hours. It was only successful before that up to eight hours. The clot was removed and I was said to have locked-in syndrome.

I obviously do not have that now, but I encourage you all to never give up. God has a plan for all of us in some way.

I had a brain stem stroke in October 2007. I am 62 now. I have always been active and this just wasn't what I was used to.

Because of hard work, therapy and prayers, I am back to work four hours a day. Doesn't seem like much to most, but for me it's the world.

Keep up your therapy and laugh at yourself. It's the best medicine. zlvh

We are trying to determine whether or not Mom had a small brain stem stroke. She kept complaining of headaches, sometimes severe. Since I have been in the medical profession for 20 years, I kept after her to take her blood pressure because I know that can sometimes cause severe headaches.

When she said it was "a little high" I kept after her to contact her doctor. Long story short, she didn't and was driving when she felt something pop in the back of her head and a few blocks later started experiencing double vision.

She didn't bother to call 911 or either of us as she "didn't want to worry anyone". When she finally decided to go to the doctor after 24 hours, her blood pressure was just short of exploding and she was put on another blood pressure medicine but the double vision was ignored. After I raised cain she finally went to the ER.

She has had double vision, headaches, slightly slurred speech, left side mouth draw (up), an unbalanced gait, and is constantly tired now. Had it not been for my sister and me insisting she get herself to the doctor and now specialists, we both feel that we would have found her in her apartment deceased.

It was very selfish of her not to call 911. Now the two of us are having to take all kinds of time off of work to take her to appointments. First responders and those in the medical profession would so rather have someone check something out rather than try to pull a rabbit out of a hat trying to save someone's life!

Be it a TIA (transient ischemic attack) or a brain stem stroke my mother got off darn lucky - this time.

my grandma had a brain stem stroke seven days ago, and the doctors said there is no hope. I will going to meet with the doctors to decide whether to removing her life support tonight.

I was brought up by my grandma and very close to her. I don't know what should I do. For all who are in this similar situation my love and prayers goes out to each and every one of you.

My mom had a brain stem stroke in early November. It was a large stroke and she is 81. she is very unsteady on her feet. Her right vocal chords are paralyzed. She cannot swallow. She is on tube feedings.She wants so much to eat, but is getting discouraged. What can we hope for?

a loved one is at this moment in the hospital, not sure if it was a brain stem stroke. The doctors first said it was a seizure but changed their minds. Living on life support at the moment. waiting for some answers. Anything would be helpful. God Bless.

My wife suffered from "Dementia" for five years before her sudden death in a nursing home. The doctor said she had a brain stem stroke. From the time when she began breathing hard to death was less than 15 minutes. I wonder if it was a stroke?

In June i had a brain stem stroke. the second stroke. the first one was feb. the year before.

it happened so fast without warning. i kept throwing up and was off balance and had double vision. I had therapy and the throwing up lasted two days. The double vision hung in there. i came home in july but was taken back to the hospital a couple of days later bleeding blow clots.

they gave me two transfusions and the next day the double vision disappeared. They ran tests on colon and stomach but nothing showed. this stroke was harder on me. With the first stroke i went back to work in three mos.

this stroke slowed me down. i did not lose my mind, it was good both times, but you have stress of getting your blood pressure up, so i filed for disability.

i am sixty four and really don't want to quit working but this second stroke tells me yes. slow down.

to all stroke victims: hang in there, do your therapy and keep your mind active.-- bnpy

In nov 2004, at 48 years old, i went in for brain surgery.

after 13 1/2 hours in surgery, i was left with 1/2 of the tumor and a brain stem stroke.

i was in the hospital two months and have done years of therapy. i had double vision, could not talk, on seizure meds, no balance, in fact i was totally paralyzed on the left side.

i needed 24 hour care. i have gone to china and received three months of traditional chinese medicine treatment. Afterwards, i continued treatment with a chinese doctor in the states.

i am now totally independent, off seizure meds, no double vision, talk normally, and much more. acupuncture has given me hope, even after five years. i pray this encourages others to not give up.

I had a stroke two weeks ago. It is and it was very hard with my right foot and hand paralyzed. Now I can move the right foot and hand and I am working very hard. Vision still burly. I am a 50 year old man.

my loved one had a brain stem stroke five days ago.

He received tpa meds after going to er.

The first two days he could speak with slurred speech, could move his limbs. on day four, he had a nose bleed and they had to put him on respirator. he is now sedated and on temporary feeding tube.

The doctors are advising to wait three to five days to monitor and see. Everyone is different and cases vary.

We trust God will will prevail. My friend is a christian and ready if the Lord takes him home. We love him and are not giving up.

He has a family who cares and two grandchildren who need their grandpa. Please pray for us.

I had a 6mm ischemic brain stem stroke less than two weeks ago. After remaining dizzy for 24 hours and nauseous, which I attributed at first to vertigo or inner ear problems, my right side became weak. I went to a doctor and had an MRI. The stroke was a small one but I'm still a little uneasy on my feet. I wasn't even admitted to a hospital. I've worked out all my life and I've even had three small workouts while waiting to see a neurologist at the earliest date in mid-November.

My sister is in the hospital because she had a brain stem stroke. at first they told me she was dying, then we saw little glimmers of hope, then setbacks. I chose to never lose faith as long as she is with us. my prayers are with all the families going through this.

I had two brain stem strokes, nine days apart in July and August. I lost right-side movement and feeling with the first stroke, left-side facial feeling, left-side hearing, balance and swallowing with the second stroke. Tomorrow it will be 90 days since the first stroke and I have back my swallowing, hearing, have some movement in my right hip-knee-ankle-toes and my right shoulder-arm-elbow-hand-fingers. I never lost any cerebral cortex or cognitive ability and my speech is different but fully functional. I teach on the college level (I turned 57 in August) so I returned home in September and taught my first class the next day.

To what do I attribute my miraculous experience? God, countless people who never ceased to pray, and Qivana -- a little nutritional supplement of herbs and probiotics I had begun taking daily in April.

My dad is 96 years and he suffered a brain stroke earlier this month. For about 10 days, he spoke, ran jokes and was his jovial self. The speech was somewhat slow, and also was his swallowing. Then a week ago, he could not swallow anymore, lost his speech and had difficulty breathing. He is breathing on his own with the help on machine that automatically kicks on and off as needed. He hears and reacts to my voice. He is in the ICU. He now has pneumonia, water in the lungs, an affected right lung and thick yellow secretion is being extracted. I am remaining strong and accepting God's will. God will decide the next move. For all who are in this similar situation my love and prayers goes out to each and every one of you.

My husband had a massive brain stem stroke in 2006. He was in the hosptial and rehab for 11 months. He couldn't walk, talk, eat, swallow, see.

He had a trach and peg tube and was very messed up. He came home in 2007 with the same issues. He got vital stimulation for his speech and swallowing for a good year and a half and now he can eat most stuff if he goes slow. He no longer has his trach to breath or a peg tube to eat. He gets rehab from me and out patient.

My husband was not brain dead when this happened I decided to get the trach and peg tube and with over 3 years of working hard we have come this far.

You have to be able to give it all you have. I still worked full time and choose to do all the nursing duties myself. I had no help at all from his family. My family and work helped me greatly with just a shoulder to cry on. This isn't an easy job but I was determined to see it through no matter what.

He has a blockage again but we are going to get a stent. My husband is a miracle but you have to be strong willed to pull this off. God bless all of you and don't give up, It's to easy to take that route. Don't feel sorry. Push ahead and know you will be in the fight of your life. *Good Luck*

I had a brain stem stroke back in February, only a small one thank god, My balance wasn't great at the start and i was getting very tired. after a few days i had trouble walking, went to hospital and eventually it got worse. i couldn't swallow my food properly; it was a very frustrating time. My stroke was due to an underlying medical condition. I have more or less fully recovered and look forward to living a good life. I have been told it could happen again but i most keep going. It is very difficult for me to write this but my main point is you must never give up, keep yourself active and stay positive.

My father had a brain stem stroke on the Friday of Memorial Day weekend he was in ICU for three weeks. the doctor gave us no hope. he was moved to a hospice unit were he was taken off life support. he lasted two weeks and he died in June. I know in my heart he heard everything that was said in his room. If you're going through this my heart goes out to you because there is nothing any one can say to make it better. Just make sure you make every minute count.

I had swelling of the brain and brain stem axis due to whiplash in a 45 mph head-on in 1998. When they got me to the E.R., the hospital sent me home to die. I had brain convulsions, and couldn't swallow so I couldn't eat or drink so I had no pain medicine. I died of brain stem stroke due to the stretching of the spine and swelling of the brain. Elohim amd Jesus raised me from dead. Watch for my book "Gods True Messengers." God bless all of you as I pray God help you and yours as He helped me!

my mom had a brain stem stroke over six days ago. the doctors said there's nothing else they can do for her. she had kidney failure and is now on dialysis. she also had a trach put in today along with another breathing tube. when she came in she had a blood pressure over 300. she opened her eyes a couple of times, which wasn't expected and when i pinch her toes her legs move. she still has a gag reflex and coughs. is there anyone who can give a glimmer of hope because i'm lost, because the doctors say that she will never come out of this. she is 48 years old.

I had a brain stem stroke on September 24, 2001. I also was locked in. I knew everything going on around me but I was basically a vegetable. My family would come in to see me and I knew them and understood what they said to me but I could not respond in any way. That is the most frustrating thing about the stroke. When people would come to see me they would always ask my family what the chances were of me living. I could hear all of this but since I could not move my eyes or blink, they thought I was in a coma and could not hear. So when you go to visit your loved one please be careful what you say in their presence. I was in the hospital for two weeks and in rehab for six weeks. It takes the whole support group to get involved.

My sister in law had a massive brain stem stroke caused by a hemorrhage and high blood pressure. She is 40 years old and was 36 weeks pregnant. The baby was delivered and will be fine, albeit quite small for its gestational age. She has been on life support for five days and doctors do not expect her to make it. They say it's inoperable and fatal and want to withdraw life support shortly. What should we do? How long can she survive without support? She is only breathing about 40 percent on her own. Is there any hope?

my brother was diagnosed with a brain stem stroke. he seems to be OK with no visual damage. he takes a lot of meds because he had a lot of problems from being in vietnam war. i am wondering does anyone know what the future might be for him? i love him and i don't live too close to him.

My mother had a brain stem stroke back in She was on life support. She had no chance of recovery. So she died a few days later.

My mother is 49 and just had brain surgery for a meningioma. Afterwards I was told that she had a stroke on the brain stem. She is on a vent and not responding beyond occasional eye movements. Does anyone know anyone who this has happened to and recovered anything? Please let me know. I'm praying for a miracle here.

my dad had a brain stroke recently. He is walking with a walker at this point after physical therapy. His main complaint is feeling numbness on his right side after eating. Has anyone else had this type of symptom?

My father-in-law just had a brain stem stroke last night. He has all of the symtoms of a stroke. Slurred speech, hard to swallow, limp in arm and leg, dizziness. Do symtoms continue to get worse or does it stop where it is at? What can we expect? Thanks.

My husband is 54 and had a brain stem stroke yesterday. He is having double vision and trouble with his balance. we were lucky to have gotten him for treatment fast. we are all praying that he will be OK.

My sister is 51 and had a brain stem stroke in May. It has only been 2 months and she is doing great. At first she could not talk, walk or use her right arm. She now walks about 70 feet with a hemi walker and uses the bathroom by herself. She still cannot do too much with her right hand, but I taught her how to do things using her left hand. She has been in rehab the whole time but they only can do so much for her, and then she loses her temper. Are the temper and mood swings part of the stroke? Now she is feeling sorry for herself and does not want to help herself. Is that normal too?

my father just suffered a brain stem stroke yesterday. fortunately, he is still articulate and relatively mobile so we're hoping the damage wasn't severe. any tips as far as what to look for or how to handle this situation? he's currently in icu and honestly we've never been through this.

hi,i just returned from the hospital for a weekend visit.I had stroke in my left lower brain around two weeks ago.I had the clot buster or TPA administered fairly quickly and since i had most of my stroke at the hospital and given my age of 37 which is pretty young for a stroke i am recovering quickly.They say iam lucky and no doubt i am because that TPA is incredible, but you must think and be really positive as that will get you through. your mind is more powerful than you realize and if you believe you will get better and not accept your deficits and be willing to put in the work you will beat it.Doctors always say that they don't know if you will recover 100 percent because that depends on you and what you think about and how you will deal with what your faced with. Many people accept their fate and live with many deficits while others come back stronger than before because of how they think. I will be better and stronger than before. Life means a lot more now.

7-18-09 My 32 year old nephew had a massive brain stem stroke on 7-15-09. He never smoked, drank or used narcotics. Basically, your Joe America. After 2 brain surgeries to relieve his swelling, the doctor told us that there is no hope. His wife is planning on removing his life support on Monday. In my heart, I feel as though he has already passed on. I don't sense his soul's presence anymore. Once the life support is removed, about how long do you think he can linger with the support of Hospice.

My father had a brian stem stroke 1yr ago March of '08 he was not expected to live, and now he is walking w/ a walker and talking. He was paralized from the neck down and now he is living a next to normal life. He lives w/ mayself and my husband but is very independent. All I can tell everyone who is going through this is just hang in there it will get better w/ lots of heavy p/t you can live again.

My grandmother just died of one after have lung cancer surgery. this happened yesterday. she died instantly. this type of stroke is very bad. i couldn't believe something like that could happen to a person.

My nephew, 41 years old, suffered a brain stem stroke three years ago January. His wife tried to care for him in his mother's home by herself with very little or no help. She tried to work as they had no money. I am the aunt of the stroke patient and tried to be a caregiver as often as possible. Basically the winter months and back to the north in the summer.

He is now in a nursing home and has very little use of his arms and legs. He has to be feed and cared for completely.

My questions is where can you get help with stem cell research because I think this is the only thing that could help him.

3 weeks ago I had a Brain stem stroke which caused left ear hearing loss, left eye loss of movement and numbness/tingling on right side of body. The doctors at Emory Healthcare in Atlanta stated the bleed was in the pons due to a cavernous malformation. Has anyone ever heard of this before?

After reading the above stories it sounds like I am blessed to be alive.I give God all the credit!!!

i had a brain stem stroke when i was 16 years old, i'm 20 now!

i lost motor functions, equalibrium and dexterity in my whole right side and not very noticeably on my left, i lost my gag reflex and my ability to talk. never lost my vision, sense of touch/pain, my sense to hot/cold though. long term affects were it affected my short term memory, gave me asthma and motor functions are not the same as they used to be, bad immune system as well. i recovered in just 3-4 months and did outside therapy for a year now i'm basically back to normal.

when i had it i wanted to give up on life, but i'm still living my life all it takes is a will to live and lots perseverance.

posted by sheetal sood

My brother had a brain stem stroke 13 days back, he is also having clots in frontal lobes both right and left, he was kept on ventilators for a week but still he is unconscious, we are worried for him, can anybody tell me where i should take him? he was having his treatment in P.G.I chandigarh, then doctors asked us to take him back home, then we took him to Silver Oak chandigarh India, but now it's 13th day, soon we have to go home back as doctors asked us to do so, where should we take him for his next treatment?

My brother Nelson suffered a brain stem stroke a few days ago.

I went to see him the next day after a 300 mile drive.

The first day he looked very bad.

The second day there was some improvement.

He could move his arms and legs, squeeze my hand and open his eyes from time to time.

However, he needs help to breathe.

Nelson has not talked or made a sound this first week.

We are still not sure of the full extent of his condition.

Right now, it is wait and see.

It is a hard thing to deal with.

Many warning signs were there for years.

My advice to you is watch your weight and blood pressure.

Ask questions and eat right.

Be as active as you can and see a doctor regularly.

George Vreeland Hill

For pirceyx2 or anyone who is dealing with locked in state: There is a French movie called the Diving Bell and the Butterfly. It is the true story of a guy who had a brain stem stroke and ended up in a locked in state. Using his right eyelid, he was eventually able to compose an entire novel, which is the basis for the movie. Showing this to a patient could serve as inspiration to continue living.

I had a brain stem stroke 3 months ago. Spent a month in hospital and inpatient therapy and outpatient therapy for the last 2 months. I have problems with left hand, left leg and swallowing. I'd like to hear from anyone who has recovered from a brain stem stroke. What specific therapy treatments work best? Does anyone have experience with treadmill therapy or hyperbaric chamber treatment?

12/11 Thur had near fatal brainstem stroke. TPA administered 10 minutes before 3 hour window closed. Successful but have challenged ability to speak, severe weakness on right side and weakness on left side. Some transient difficulty in breathing. Scheduled for speech and PT starting next week. I know I am very lucky but what can I realistically expect as a prognosis? BTW I also have a deteriorating motor neuron disease, Hereditary Spastic Paraplegia, which complicates matters.

My friend suffered a brain stem stroke and she is paralyzed and in a locked in state on a vent/trach. Her drs are trying to wean her from the vent. She is sinking into depression. What can we do to encourage her will to live and those resp muscles to strengthen enough to wean off the vent?